“Wain wain, doe away, wain wain .. (mumble mumble)..wain doe potty…
Aria doe potty!”
Well I guess the next best thing to potty training is a child who changes her own diaper. Maybe it’s better, actually, because you still get the luxury of not using public restrooms.
She frequently will come into the living room with a new diaper and announce, “Aria change diaper” then proceed to throw herself onto the floor and pull her pull-up down, then sometimes will go grab wipes, sometimes not, and then pull on her new diaper. If you remind her, she’ll even put pants back on afterwards as well.
Although, it’s not so pleasant when she decides the powder room floor is the best place to lie down and change her diaper. Also not so pleasant is when she decides to squat on the toilet, shoes still on, trying to figure out how we manage to sit on the potty without stripping our lower half, and crying because she’s frustrated she can’t manage to figure it all out.
Also not so pleasant is when you’re trapped in the bathroom with your pants around your ankles desperately wishing for a little bit of privacy and she’s standing there clinging to your leg, with her own pants and diaper around her ankles, clutching a fistful of toilet paper, sobbing inconsolably because she either wants to wipe you or you to wipe her or who knows what she’s actually saying and she doesn’t even know what she wants but it’s obvious she needs a nap and this really isn’t the best place to be trapped and it’s just so gross and why do we have to have a meltdown in the bathroom of all places.
I’m upstairs feeding the baby and trying to put her to bed. I hear Aria come upstairs and look through the books on the shelf outside her door. She apparently makes a selection and starts back downstairs.
I hear Eric say to her, “that’s a lot of books you’ve got there, Aria!”
She replies, “daddy read dis!”
Before I hear his response she starts demanding, “basebawl!”
Eric replies, “this is football, baseball season is over…”
“No footbawl. Basebawl. Yeah, basebawl. Aria basebawl.”
I guess at this point she’s made it over to him with her hoard of books and I hear him reading to her.
At some point she decided they should both read, and that she didn’t want to sit in his lap anymore, but that didn’t mean he should stop reading, so I heard two stories going at once, one intelligible, the other not so much.
Eric took Aria over to the playground in the mall while I took Avery for pictures. He was hovering around her while she climbed on things meant for bigger kids, and she got sick of it and walked over to the bench and patted it.
Daddy said he wasn’t going to as long as she was climbing.
“Daddy sit! Sit down !”
Every night at dinner, at some point Aria grabs a fistful of whatever she’s eating and tells one or the other of us, “eat dis!”
When we go outside to play Aria demands that I do what she says.
So we run around the yard.
“Mommy sit here!”
So we sit on the neighbor’s steps.
So we jump down the sidewalk.
I’m sure the neighbors are amused.
Some nights when I’m reading to her she decides to take over. My favorite was when we were reading Horton Hears a Who. When the Whos speak the words are very tiny, so I read those parts very softly. Aria told me “Aria read!” and turned the page, so she had fresh new material, and said some jibberish that maybe meant something, then turned the page and mumbled some stuff very quietly.
We took turns reading after that, and had to preface each page with, “mommy’s turn,” “Aria’s turn,” etc.
If something needs to be thrown away, instead of jumping at the chance to go do it herself as she used to do, she now tells one of us to throw it away.
“Mommy change diaper. Mommy throw away. Dirty diaper. Mommy throw away!”
The best was when Eric’s mom was visiting and Eric gave something to Aria with his ususl, “Aria, garbage. Go throw this away.”
“Without any hesitation Aria turned to her grandmother and said, “here. Throw away,” then turned back to what she was doing.
My little sweet tot is growing up so fast. Everyone says it, I know it and that’s why I force cuddle her and Avery as much as I can, to squeeze as much baby from them as I’m able. Poor things. Actually Avery still likes it. She sleeps so much better while draped across me.
Ever since Aria started daycare I’ve just watched her blossom. She comes home singing songs, like her HIT’s (ABC’s.. I think it’s very telling..) even though she doesn’t get all the letters right or in order, but you can definitely tell that’s what she’s singing. She sings Teddy Bear and Twinkle Star and Wheels on the Bus and a bunch of others and it’s just soo cute to figure out what she’s saying and chime in.
Although not Eric. He’s not allowed to sing with her.
I picked her up yesterday and as we were driving away she said, “bye bye school” .. then “bye bye Priya.” She knows the names of her classmates! I’m not sure why I’m surprised, but it’s just so cute that she knows other kids besides cousins.
Her vocabulary is taking off, and she’s speaking more and more in full sentences with correct prepositions. We’re going from “eat Pappy” to “eat WITH pappy.”
Lately when she comes home from “school” she will give everyone hugs then proceed to play with her toys all by herself. It’s amazing.. her toys have become interesting again. And she doesn’t require assistance. And it’s sooo much better than hitting, biting, scratching and kicking everyone. She’s being nicer to her sister and just overall more pleasant.
Time away with lots of stimulation and peer pressure works wonders on terribleness. I’d almost be willing to say that it feels like the roughest part of the terrible twos is past.. but I’d hate to jinx myself 🙂
So while she’s still easy to dress in the mornings because she’s not awake enough yet to have an opinion, the night night routine is crazy stubborn. She has to brush her own teeth, pick out her own pj’s, decide which book(s) to read, and demand me to sing certain lullabies. We sing Twinkle Twinkle Little Star at least three times each night, with her sometimes singing along with me.
We have a book of lullabies and poems and some of them I know the melodies to. I think it was only one time that we sat and read it cover to cover and when there was a lullaby I knew in there, I sang it. Ever since, if I sing one of those lullabies, even though I have them memorized, I have to hold the book. And open it to the correct page so she can look at the picture. So I will be sitting on the edge of her bed, begin to sing Twinkle Twinkle.. “book!? Twinkle twinkle book!?” So I usually just hold it in my lap flipped open to some page and hope she doesn’t try to see the picture. It somehow comforts her for me to just have the book in hand.. in case I forget the words, or something, you know?
And speaking of stubborn, I wish I had recorded the argument between her and her father the other night. They were both demanding that the other go throw the diaper away. I was in a nearby room and I just kept hearing, “Aria, garbage, please go throw your diaper away”, then “daddy! Throw away!” then “no, Aria throw away,” “nonono daddy, Throw Away!” back and forth..
We’re pretty sure she’s OCD. Maybe every toddler is, but ours is ridiculous. Or at least she’s incredibly particular.
Any time she wants to eat something she needs to get a spoon out of the silverware drawer. Like for grapes, or crackers, or raisins. You know, things that need spoons.
She freaks out if I don’t tuck her under her blanket just so..or if Blanket isn’t present when she remembers it she panics. The zipper on her jacket, or buttons, have to be done the whole way up.
If she sees something one way once, it usually has to remain that way. Like where her stuffed animals are on her bed, or where her cup is placed on the table.
She’s so incredibly cute and fun though. We do so well on dates when it’s just the two of us, like to the grocery store or wherever, as long as it’s not too long or really bad timing, like late at night. We carry on conversations and I get lots of huge smiles and silly faces. And hugs. Lots of hugs and slimy kisses.
She started calling my mom Boppy when she came to visit. Then when she left her other grandmother became Boppy. Then her aunt also became Boppy. And I asked her the name of her teacher at daycare and she too was Boppy. I’m not really sure what’s going on there. Oh and her younger cousin Lucas calls his mommy mama, but it sounds kinda drawn out like, “mawma.” I have recently been called mawma a handful of times by my little copycat. And Weesa. I blame Eric for that one.
It’s so crazy how different they seem already. Avery seems sooo much more reserved than I remember Aria being at this age. I know I shouldn’t compare, but I worry about Avery. She is smiling occasionally, but she started later and doesn’t do it nearly as much as Aria did by this age. Of course, I can’t really blame her if she’s a more solemn baby, I know I’m more solemn around her. She’s seen me cry more in her two months than Aria has in her entire life. I’ve been trying to baby talk and coo and smile at her and play with her, and read books to her, but she mostly seems interested in just eating and sleeping still. She does light up when placed on the floor on her jungle mat and can look around at all of the colors, and she likes to sit up and watch, but she doesn’t really make her own contributions much yet.
I did get some adorableness the other night. I was working on going to bed, but after feeding her she wanted to chat, and was smiling and cooing away, and saying “o” in the most adorable way, so I had to stay up and talk and smile back, and take pictures and video.. so we went to bed rather late.
I just love my girls so much. I can’t wait to see how Avery blossoms, but I also don’t want to wish away the snuggle monster yet. I can deal with the stress of not having a clue what’s wrong with her when she cries in exchange for getting more tiny cuddles.
And I wish that on my friends and family who are waiting patiently for their first or second baby.. five of them I’m praying for right now. I hope they get this joy soon.
In rereading some of my old posts, I know that God has been preparing me for my little Avery. I don’t know that I would have been prepared for her in the ways that I am now, had He not given me the trials that He did.
I endured losing a baby before it ever had a chance to make it out into the world, learned how to trust God in all situations, and experienced a much worse situation with a miraculous outcome before bringing home the Avery that I have now.
So as we discover and uncover new problems, or work towards figuring out how to treat those we already know of, it’s become just a normal part of life that doesn’t worry or stress me out unduly. I know what the alternatives are, and I’d much rather have the baby that I have than to endure another loss, or suffer through the what–might–have–been.
With that in mind, it’s almost become a badge of honor to talk about the complications of my baby. I’m not sure if how I’m handling this is good or not, though.. on the one hand I explain away her issues with nonchalance and maybe taking it a little too lightly, as if I were proud of the things she’s enduring and the number of doctors visits she’s had, and look how well I’m handling it. Sometimes I feel that I must look that way and appear pompous or something. When in reality what I’d really like to convey is that I’ve come to terms with the issues, and not only has God provided me with a number of resources to help us through this and in many ways make it even easier than a baby without issues, that He’s also used some of the smaller issues to reveal larger ones that wouldn’t have been discovered until much later otherwise.
And in reality, none of her issues are that great. They’re all “mild” and treatable. I have nothing to complain about compared to other mothers with life long issues, or fatal issues. I just have to continue to keep it in perspective, which is another reason I explain it as not so big a deal.. who am I to make a mountain out of a few little issues? I guess it depends on who you’re talking to.. some people seem so upset for us because they didn’t have any complications with their children. Others offer comfort by telling me their own stories, which are often much much worse than what Avery is dealing with.
I do still cry over her on occasion. I know that I’m not quite the lighthearted person I was before. I’m not sure how much of this is due to the last couple of months of stress, uncertainty, hormones and overwhelming love for a helpless innocent who doesn’t even know what she’s dealing with, and how much of it may be postpartum depression.
I think what upsets me the most is when Aria hurts her. I know that Aria has just started her terrible twos, that I don’t spend as much time with her as before the baby, or as much as I should be spending because of the needs of the baby, and she’s dealing with a lot of change right now. Everything about her can be rationalized and explained away. But none of that matters when she walks over and starts by patting Avery but it turns into scratching her. Or a kiss becomes a bite. Or a “hold this!” cuddle turns into a violent squeeze and who knows what else and the baby begins to cry. I hate it when Aria makes her cry. It makes me cry.
How could she want to harm this tiny helpless little baby that has done nothing to her? I know it’s jealousy, but for goodness sake take it out on me instead! Doesn’t she know what this tiny person has endured already? And what she has yet to go through? Of all the people in Aria’s life, Avery is the most heartbreaking for her to harm.
She’s two, Lisa. She doesn’t realize what she’s doing.
And once Aria is made to stop hurting Avery, Avery gets over it immediately. She may have a new scratch or bite mark or other badge but she gets over pain exceptionally fast and continues her curious stare at her older sibling as if nothing had befallen her.
I will say we’ve made great strides in taming the wild Aria. Between advice from family and friends, our therapists, and articles, etc. I’ve managed to take new approaches to Aria to reduce the number of attacks. She’s now afraid of biting for fear of a spanking, and she doesn’t really hit that hard anymore, it’s more a test of if we’re paying attention to her, and we’re getting good at catching her before anything actually escalates and put her to bed before she really gets cranky. Also, she’s learning to focus her frustration at us more than the baby, which I will gladly take.
I don’t want to make Aria sound like a monster. She is a typical terrible–two–toddler who is behaving as expected with all of the changes and with less attention than she’s become used to, and most of the time the violence doesn’t start until close to bedtime and she’s losing control of her emotions and temper. And it’s not like this is terribly frequent or terribly violent, but when something does happen, it breaks my heart, because it’s targeted at Avery.
So Avery. What we know about and are still exploring:
She has a cleft palate, and partially clubbed feet. She also has torticollis and plagiocephaly, a sacral dimple and potentially Spina Bifida and/or tethered cord.
Her suite of specialists include a team of Cleft Palate folks (including the surgeon, nurses, social workers, coordinators, etc. all of which we have to meet with at each visit), an Orthopedic doctor and team, a Neurologist, an ENT, a Genetics doctor, a Physical Therapist as well as Feeding Therapist, some other folks that are tracking her for different reasons (Early Intervention, Medical Assistance, etc.), and of course her Pediatrician.
I’ve learned more medical information in the past two months, and what’s interesting is I had never heard of any of these issues before. Not even Spina Bifida. I had seen those commercials for cleft lip over in third world countries, but not cleft palate, and never dreamed it would happen to us. So Avery has been an phenomenal learning experience for me, but as I mentioned, we have so much help, I believe there are at least 25 people out there working towards making Avery whole.
More about each issue:
- The cleft palate (a hole in the roof of her mouth) is fixable via surgery, around 9 to 12 months, but she currently has a feeding therapist that comes to our home once a week to help me and teach me as there are lots of other things that come with the territory, and she’ll need speech therapy when she starts talking.
- The partially clubbed feet (the top 1/3 of her feet are turned inward.. medical term is metatarsus adductus) are currently being corrected with casts, and she’ll get special shoes later. She’ll have physical therapy for this once the casts are off.
- The torticollis (tight muscles from being cramped in the womb, has a hard time turning her head one way which means she has a flat spot on her head, and can cause developmental delays from not using the other side of her body because she won’t look that way.. etc) and plagiocephaly (head is not round (caused by the torticollis) and not symmetrical) are both also correctable through physical therapy and potentially a helmet. Her face isn’t completely symmetrical, but fortunately it’s not terribly obvious unless you spend a lot of time looking at her, which I do, but it’s supposedly all correctable. She has a physical therapist that comes once a week to work with her and teach me stretches and things to do with her, ways to encourage her to turn her head to the other side so that it can help round out her head and correct the asymmetry.
- Sacral dimple (a very strange indent on her lower spine) is usually related to Spina Bifida (neural tube defects, usually an issue with a hole in the spine) which can lead to tethered cord (this is the latest potential finding, and can cause all sorts of issues in adulthood, but can be surgically corrected in childhood.. still learning about this, and how it would be corrected if she does have it). This stuff is still up in the air and more tests have to be done. They found in an ultrasound that her cord was lower than it should be, so want to do an MRI to better evaluate, but that requires sedation and won’t happen for a couple months.
- The ENT is because of the cleft palate, as the hole in her mouth means a lot of what she eats gets into her sinuses, so she’ll most likely have tubes in her ears, etc.
- The neurologist is because some of these issues, like Spina Bifida, can affect the brain, and they also want to follow what happened in the hospital and ensure that she really is, truly and still, without calcification.
- The genetics is because there are so many different issues that they want to see if these are all coincidences or if there is a syndrome or some other underlying chromosomal issue, and to identify anything else that we should watch for if it is.
The upcoming tests that still need to be done are an MRI, another CT scan, and a chromosome blood test.
Every single week of maternity leave we had at least one appointment, but usually had multiple per week. Avery and I got so good at traveling together that when I started back to work I must have checked the back seat a dozen times for fear that I’d brought my baby along with me.
The only scary issue is the tethered cord. But really, if she does have it, they can correct it. And it would be an amazing blessing that it was caught in infancy as it was. It may never have been been caught if she didn’t have other issues that brought it to light. A tethered cord is where the spinal cord, which should be free at the base, is not and as the child grows it pulls on nerves and can cause all sorts of bodily issues. When discovered in adulthood it’s because a lot of damage has already been done, and although they can untether it, they can’t reverse the damage, just keep it from getting worse. If she has it, I would rather it be corrected before anything irreversible happens. And again, we wouldn’t have known if it weren’t for some of these other issues.
So the cleft palate is both a blessing and curse. Because she can’t nurse I have to pump, and I hate pumping. But I’ve found ways to make it less tedious, such as feeding her while pumping. But the blessing side is that after she’s eaten she really should be held upright to reduce reflux. And so I have the most perfect excuse to hold her on my chest, snuggled under my chin, and recline on the couch or in bed and just hold her. For a good while to make sure it stays down. So I have my snuggle bunny and it’s wonderful. Another blessing from the cleft palate is the need for a feeding therapist who has given me the most wonderful advise on how to get her to sleep through the night. So at two months of age she is sleeping through the night most nights! It’s wonderful.
Oh the snuggles. My cuddling snuggly little angel puff.
I love having a baby again. And on the occasions that I wish she were older so she could have some of these issues corrected, or have a better chance of fending off her sister, I remind myself that once this tiny snuggly stage of life is gone it’s gone forever, so just cherish it as much as possible while I can.
Her name was picked from the very beginning. I didn’t have this with the last baby that was miscarried, but with this one, I just knew her name was going to be Avery Faith, long before I was even told she would be a girl. I just knew. And the few times Eric and I did talk about names, we both liked the idea of giving her a faith middle name like her sister’s Grace, so once I heard him say he wanted to name her Faith, which is exactly what I was thinking, the name was pretty well set in stone for me. But I couldn’t ever get him to really talk about first names with me, until literally the morning we were driving to the hospital. That was when he started talking in earnest, but he finally told me, after me rejecting a few he suggested, that he knew I was pretty set on Avery and nothing he said was going to sway me. He was right. I wanted to hear his thoughts, but she’d been Avery Faith in my mind for nearly nine months, and I was kind of stuck on it.
The hospital stay was a little different this time. With Aria the whole operating room and post partum section had been under construction, so it was much nicer this time. But just as scary. We checked in and were asked the same questions by every nurse, doctor, resident, etc. that would be assisting that day, which was a lot, and the closer it got the more nervous I got. Oh, and because I would need an IV they started trying to get one in. Five tries later they finally did, and I had bruises all around both elbows for about three weeks after.
At one point a nurse asked if I had fallen in the last three months. I asked Eric if me tripping over the baby gate counted. He said, “did you fall?” sarcastically, because he knew I had, and I said, “well yeah..” so the nurse started typing, while muttering, “I wouldn’t have told me that…”
My wrist was adorned with a bright yellow bracelet stating Fall Risk and everything else was too, including my charts, the whiteboard in my room, etc. They wouldn’t even let me walk down the hall to the operating room unassisted, because I might fall. *sigh*
So we get down there, and Eric in his scrubs had to wait while they put in the spinal and got me situated. That was the worst part. The spinal is the most scariest thing in the world, and I had a very vivid recollection of the last time. When we were preparing to go down there they asked me how I was doing and asked why I was so nervous, I told them about the spinal experience from last time and so not only was “the best anesthesiologist in the hospital” there, but her boss, the head one, as well. But like last time, it took a good long while, with them trying to calm me, and another doctor was holding my shoulders, making me rest my forehead against hers and answer questions about my life. It felt like forever, and it probably was a very long time, and it took two tries, but they finally got it in without paralyzing me permanently.
Once I was stretched out and they got the blue curtain up, Eric was allowed in. Then someone decided the IV wasn’t working correctly so they tried yet again and the sixth one was the charm. Right in the crease of my elbow so I couldn’t bend my arm effectively.
This time around I wasn’t shaking as violently, and was able to carry on conversations with Eric, but I don’t really recall what all we talked about. To me, all of the doctors on the other side of the blue curtain were far away. Later it dawned on me they were working on my belly, so were actually very close by and no wonder they kept overhearing what we were talking about and laughing or asking questions about what we were saying.
Finally, a million years later, my tiny little baby was announced with “she’s a peanut!” 5 pounds and 10 ounces. She was born on her due date; based on my period, based on the ultrasound dating, she was right on time.
She didn’t cry. I asked if she was still in there with us, or if they’d taken her away, and they said no, she was still here but just being quiet.
That bothered me. In fact, the last 1/3 of the pregnancy I was bothered. I’m not sure why, but I kept thinking something was wrong. My mom kept telling me I was being overly dramatic, that I was overreacting because of my sister-in-law’s miscarriage at 22 weeks which had been so hard on everyone. So I tried to not worry too much when the baby would have bouts of lots of movement followed by a day or two of very little.
But when Eric brought the new tiny bundle over so I could see her, and she was just so very tiny, despite being full term. Her tiny little head was peeking out of her swaddling, and something inside me panicked. I asked Eric, “is she ok?” He replied she was fine. Why wasn’t she crying?
We were able to have her there with us for a little bit longer before they said they needed to take her back. And before I was done with my surgery they said they had to take her to the nursery.
Hours later, once I was through recovery and in the room where I’d be staying for a few more days, they kept saying they needed to keep her just a little longer. First it was that they needed to warm her up to bathe her, then it was they needed to warm her up from her bath..
She was born just before 3:30pm, but we didn’t see her again until after 7pm. Finally they brought her in with the explanation that she just needed some help getting warm because she was so small (with no fat on her, except in her little cheeks).
Then the pediatrician on call told us that she had a cleft palate. We had known one of her feet would be slightly turned because of the ultrasound halfway through pregnancy. At the time this was discovered they did some tests to determine if it was Spina Bifida. That had been hard for me, thinking about what her life would be like, until we learned that the turned feet were a family trait, most likely not Spina Bifida, and was completely curable before she even began to walk. It was mostly disregarded at this point, and pregnancy had continued as normal.
But now this. I’d never heard of a cleft palate before. I didn’t really learn much about it except that she had a hole in the roof of her mouth, and that we’d be contacted by the Cleft Palate center over at Children’s. At this point no one made much fuss over it, but said we’d have to work with them once discharged.
After that the focus was all on me, helping me recover. I was awoken at all hours of the day and night to be checked, given medicine, asked questions, etc. I was afraid to hold my baby because she was so small and fragile, but I did try to hold her as much as possible. We had visitors, and everything was pretty normal. Maybe all of those fears for her had just been hormones or paranoid new mommy fears. I was encouraged to nurse her to get my milk in, and to work on getting myself up and out of bed.
She had been born on a Monday, and by Tuesday I had a hospital pump to help get my milk to come in sooner because Avery was loosing too much weight and had to be taken to be warmed up a few times.
It was odd because it felt like no one was terribly sure what to do or what advice to give. I was told by several that I should continue to try to nurse her, I was told by the guy I spoke on the phone with at Children’s (for Cleft Palate) that she would never nurse, and I was told to give it a shot by others. I was so confused, and really had my hopes up that I could nurse her, but when she reached 5 lbs 2 oz the Pediatrician started a regimen where she was given formula and her temperature and blood sugar tested every couple of hours.A nurse would come in and prick her foot to test her sugars and the results weren’t where they should be. She kept trying new things throughout that day, including special bottles to help Avery overcome the hole that was making suction difficult for her. The pumping helped, I had milk by Wednesday night, and I even went to the Discharge class they encouraged us to attend.
But Thursday morning a NICU (neonatal intensive care unit) doctor came in and explained that he and the Pediatrician were in agreement that Avery should stay a little longer. We weren’t told how much longer, but that she wasn’t actually going to the NICU but to a special wing where we could have our own room together and she’d be monitored.
I was discharged and the nursers were super nice in providing me things I would need to help me endure at least a few more nights, like pads and whatnot, and I held my tiny baby as we were pushed in a wheelchair down to the second floor.
The room was small, but not tiny, and Avery had her own giant crib and I a little couch, but it also had it’s own bathroom and sink.
The nurse that “registered” us explained how things worked, including that I would be brought breakfast but would get a voucher for lunch and dinner, that I would have to keep a sheet recording when and how much she ate, how long she nursed on each side, what was in her diaper, and her temperature. Our routine also included a blood sugar check before each feeding, so I had to wait for a nurse before I could start to feed her.
I was on my own. Granted, she had monitors attached to her for her heart, etc., but they wanted me to take over taking care of my baby.
Eric went home that night and the next day brought me more clothes and things to get through an indeterminate amount of time. We really had no idea how long it would be, but were both pretty sure it would be by the end of the weekend at the latest.
The NICU doctor came to visit on Friday and said they weren’t really sure what was going on, but that she had to have 48 hours of good temperatures and blood sugar before she’d be discharged. Friday night the nurse offered to take the middle of the night feeding and I very tiredly accepted. By this time I’d given up on nursing because it was just frustrating the baby and, as one lactation nurse finally explained to me, was going to be unrealistic once I got home, to try to take care of a newborn, a toddler, have a life, and try to nurse, pump and bottle feed a baby, which was three times the work and time verses pumping and bottle feeding which would only be double the work I’d grown used to with Aria. I’d settled on one special bottle type that I was comfortable with and so the nurses used it when feeding her for consistency.
8 am the next morning I was awoken by little chirps. My tiny baby was looking towards me from her perch on her giant crib (it was really normal sized, just looked enormous around such a tiny bundle) and making little chirps. I looked at the clock and panicked. The day nurse wasn’t there yet, my baby was hungry, it had been at least four hours which was too long. She had barely been keeping relatively acceptable numbers at just three hours between feedings. It had been much too long. My heart sank and I rushed down to the nurses station and very frantically, trying my best to be polite but incredibly frustrated, explained that they had to test her NOW because I needed to feed her.. it had been too long!
The nurse tried to remain calm, but I could tell she was worried too. She kept talking, while getting the testing device out, and when the first result came back too low, she said, “we’ll be ok” and tested again. My poor baby. But it was too low. The 48 hours started over. I was so upset. I held a grudge. I wasn’t sure if I was mad at her or the night nurse for not passing on the regimen, I was just so upset. I was mad at myself, how had I slept so long? And not to mention who knows what it was doing to my poor baby to go that long without eating.
That afternoon they brought in an isolet, which is one of those incubator things you see in the NICU. It was put at something like 90 degrees and she was stripped down to a diaper, socks and a hat, which was a lot less than she’d been in (add to that one of those long sleeved shirts the hospital puts them in, plus a long sleeved footed sleeper, a swaddling blanket and a full blanket folded on top of her). She stretched out and enjoyed the warmth, and just looked content to finally be warm. I was also encouraged to spend skin to skin time with her. I had been holding her like that when we were both upstairs in postpartum, but now I was so afraid to strip her down for fear of freezing her, but I did and kept her under my shirt, under a few blankets. She was just so tiny with that little head sticking partially out of the top of my shirt.. so tiny and precious.
So Friday when the NICU doctor had visited and didn’t have any answers for us I asked if it would help if he had information about the placenta. I told him my OBG had sent it off to be analyzed; she had told us at the time that she sent it off because it was small, and it was standard procedure. He found the results and was happy that it had been analyzed because it did offer some answers… he told me that it was small and Placental Insufficiency was most likely the cause of her small birth weight. But he was also worried about an abnormal blood flow and wanted to do some more tests.
On Sunday someone came in and took an ultrasound of Avery’s head. That afternoon, when Eric was on his way to visit, another NICU doctor came in and said, very nervously, that they had found calcification in Avery’s brain.
Wait what? She couldn’t tell me what that meant or where or anything else, and I very firmly requested that the NICU doctor that we’d been working with pay me a visit.
Shortly after Eric walked in the room and found me sitting there sobbing. He dropped the items he’d brought me, and asked what was wrong. I told him.
A short time later our NICU doctor walked in with the comment, “my heart breaks for you.” We were both crying as we listened to him explain that something had happened in the placenta, and there were a few known causes for calcification, one of which was the CMV virus. They were going to do more tests, and she’d be followed by the hospital through her infancy and childhood, we’d be given information for Early Intervention, a neurologist was going to see us, etc. etc.
After he left Eric started Googling. He spiraled into a depression over the next day or so. He would come visit in the morning and sit there on the couch with me all day, waiting for more information. The more research Eric did, the more depressed he became. CMV was a crippling virus that would allow her to start out fairly normal, but would degenerate into more and more brain damaged and less functioning child as she aged.
We were going to have a brain damaged, possibly mentally retarded child, with a cleft palate, turned feet, and who knew what else. Out of curiosity I had tried to test some of her reflexes, and she wouldn’t grip my hand, had no startle reflex, and wouldn’t do the stepping reflex either. In fact she wouldn’t even stiffen her legs, she would just go completely limp if you tried to stand her up.
Every night, and periodically through the day, I cried. I spent so many tears over my little baby as I fed her, held her, cuddled her, kissed her.
One night I kissed every inch of her little head while praying that God would heal her, that He would take away the calcification. I had this very strong image of the woman in the crowd who said to herself, “if I could just touch his cloak I’ll be healed” and I thought to myself that if I could just touch Jesus’ cloak my baby would be healed. I was so very sure of it, there wasn’t a single doubt in my mind that God could heal her, I was beyond sure that, given the opportunity, I wouldn’t hesitate to reach out and touch his cloak to heal my child, and I knew she’d be completely healed. But I wasn’t sure if that was God’s will for her. Maybe she was meant to be this way for another reason.
I came to terms with her calcification, although deeply saddened by it, but modified my prayers to include that if it wasn’t His will to heal her, to let her be a light in this world. Let her be named Faith for good reason, that she would strengthen or bring new faith and glory to Him. Let her life be a story of encouragement.
And our family and friends prayed. And they told others who also prayed. We found out that we’d been put on several prayer chains and were being prayed for by so many people. Our neighbors had learned of it and were praying for us and spreading the news so others could pray for us.
My sister said her church was praying for us, and her pastor had prayed that the doctors were wrong.
At one point the doctors told us that she didn’t have any outward signs of seizures, but that didn’t mean she didn’t have electrical ones in her brain, so they did an EEG. They tested her eyes for something, and took numerous blood samples for tests. We waited and continued to pray.
On Tuesday when Eric came to visit I told him I just wanted to get out. I hadn’t been outside since checking into the hospital, and I really wanted to go get ice cream. He found a place across the street so we went. Then we sat in the green space outside the hospital and just sat and chatted.
One of his friends from years ago walked up and saw us, saw the tears on our faces, and asked what was going on. We told her and she started to cry. She had been bringing cookies for the nurses and was very sad for us and said she too would pray for us.
Another thing that happened Tuesday was our sister-in-law Bobbi took Aria with her family to a fair or block party or something, along with another cousin as well. The kids all got Faith stamps on their hands and she sent us a picture of their hands with caption, “Team Avery “Faith”!!” This made me sob, for so many reasons.
During this week we had visitors, including Eric’s parents, his sisters-in-law.. each one would ask if it was ok to visit and I would hesitantly allow it despite my increasing spiral into reclusivity.
Thursday morning one of the NICU doctors came in in a rush, and told me the CMV tests had finally come back, and it was Negative! I immediately called Eric and his relief and joy was palpable through the phone.
Shortly after that they took Avery away for a CT scan that the neurologist had ordered. She was gone a very short while, and it wasn’t much longer after that that the NICU doctor and our nurse came in, with unusual looks on their faces and a computer on a cart. The doctor told me to sit down. I didn’t, I was too nervous at what they’d found, but I did ask if I could call Eric before she said whatever she was going to say.
With Eric on speaker phone, she showed me her computer screen. It was images of Avery’s brain from the ultrasound. She said, “look at these images, do you see all these white spots? These are the calcification.” She had a name for the pattern, with image after image showing whatever this pattern was, which included deep white matter. All that was well beyond me, but I paid attention as best I could.
Then she said, “now look at this,” and opened up the CT scan results. She asked, “do you see any white?… it’s all gone.”
I looked at her unsure of what she was saying. She looked at me and said, “the white spots are gone. There’s no calcification.”
I heard Eric take a huge breath and could hear the tears in his voice. “She’s ok?”
“She’s ok. It’s all gone. She doesn’t have calcification.”
I still couldn’t talk.
The nurse started to laugh nervously and said something like, “she’s speechless!”
I was. I had come to terms with the calcification, that was no longer the issue. I was more worried about what else was wrong with her. To be told that she no longer had it was.. well kind of unbelievable. What sort of joke was this? It was surreal. We’d already started making plans for how we were going to deal with this; I’d lived with it for several days and had held my precious baby, who didn’t exhibit natural born reflexes, and what do you mean she’s normal?
The doctor said she’d never experienced this before and she didn’t know how to explain it.
Finally something clicked in my head and I blurted out, “I know what happened, she’s a miracle baby. Everyone was praying for us and God healed her!”
Shortly thereafter Eric showed up and we were discharged. It had been a crazy 11 days but we were finally going home. Avery’s temperature and blood sugar had stabilized during that time, they were done with testing her, and although the NICU doctor had given me a page full of appointments she’d made for us going forward, along with her personal cell phone in case of questions or help, we were free to go home.
We notified friends and family that the many prayers on our behalf had been answered and received back so many praises to God. It was unquestionable how much glory was given to Him.
And once we were home she started gripping, stepping, and startling as well as any other baby.
There are a number of blessings that have come from this experience. One is that it had been a blessing for me to have that time to heal from the c-section and have time with just Avery before being thrown into the chaos of life with a toddler, and I was torn between leaving behind this isolated life that was a mix of camp and prison and going home to see my precious first born who I hadn’t seen in so long (other than the two brief visits she’d made during that time) and returning to somewhat normal life.
Another is how close Eric and I became during that time. We could spend hours just sitting next to each other, comforting one another, waiting for information. We had deep conversations about what life was going to be like, and how we both hurt, and we hurt for Aria, to have a little sister that wouldn’t be the perfect playmate that we had originally planned. We never fought, we just survived together and we were on the same team.
Now, after the fact, there is the blessing of knowing what we almost endured. When things get difficult because she is difficult to feed with her special bottle and special ways of holding her, or her casts from her feet are obtrusive, or we learn of other complications she has or may have, it’s all in perspective that everything she has now is correctable, and “it’s not brain damage.” We compare everything to that. And we reflect on what other parents are enduring, those that didn’t witness a miracle and still have to live with much worse maladies, those that cannot be surgically corrected. Or cancer. Those are who we should pray for, while we give thanks for our little blessing.
There’s also the ongoing blessing of uncovering other issues. If she hadn’t had low temperatures, they wouldn’t have found the low blood sugar which would have damaged her brain over an extended time. If we hadn’t been sent to the NICU to monitor her, we would not have started to evaluate the rest of her which has now turned up issues that wouldn’t have surfaced until adulthood that can be remedied now before they cause damage.
And lastly, there is the blessing of the glory given to God because our baby was healed and she can now be a living example of answered prayers, and all those people who prayed for her were able to witness a miracle.