I haven’t posted a man update for a while on Emerie’s eye, so here goes. We appreciate all the prayers and people that ask how she is doing!
We had a doctor appointment earlier last week, with Craig and I finally allowed to both go (thanks covid). We assumed news of a needed next surgery was coming and happy to both be able to discuss with the doctor in person.
Emerie uncommonly walked in like a big girl, something we don’t often do when we go places with all three. She’s grown up (literally!) so much since the first time we visited and she struggled to climb into the patient room’s chair.
She followed and looked where Dr. Winkle asked her to, telling him the colors of the stickers and other details while he analyzed her eye.
He then surprised us with good news, noting that her eye is tracking better than it was on her last visit. Much of this can be attributed to daycare, where she is patching five to six hours a day; walking in the door at the daycare at 7:30 and wearing it until lunch, with another two hours or so after nap and on the way home.
She does not like it and will repeatedly ask to take it off. Not like patch and mommycan I take my patch off are muttered constantly, more some days than others- it’s good to know that the struggle is helping! She handles patch time better at daycare than at home, probably because there is more activity and distractions occurring with multiple other kiddos around. Prior to the shift to daycare, we were concerned with how well it would go and are so relieved!
She is a bit more clumsy when wearing the patch, but clearly she can see with her good eye covered. We try to encourage good behavior about it, such as letting her choose which color patch she would like for the morning or rewarding with a jelly bean when it’s easily put on. Some days she begs to take it off and sometimes we let her, simply because she asks and is so distressed over it- we try to be as good about it as possible and we’ve come so far from the days that Nanny Chris had to tape it onto her face! Emerie always insists on taking it off herself and will push her glasses to her forehead, peel it off, and carry it around as a prize for a few minutes. I’ve also found used patches stuck to book pages, forever stuck on blankets already through the wash, and in many random places around the house. She’s pretty cute about it and has become a good sport about it each day. That helps us parents so much, since it’s hard to force your kiddo to do something that you KNOW is good for them and helping in the long run, but causes so much angst and grumpiness at this age and they don’t understand why it’s necessary. This process is certainly easier than the previous year!
While we are very encouraged at a delayed surgery, we also recognize come summer there will likely be another one to fully straighten her eye out. I am thankful to not do that in the high of winter season and while covid is still raging through our community. And who knows? Maybe the patching will solve the issue by then…one can dream!
Almost a year ago today we were headed to the surgery center for Emerie’s first eye surgery, to remove her cataract and hopefully improve use of her left eye. Today we are back for her third eye surgery (second strabismus procedures), and fourth overall surgery, in 365 days. It’s been quite a year and little did we know what was ahead of us as we walked into the center last June, but we’ve made it through with resilience and minimal scrapes and bruises.
Unlike last year, medical processes have changed a little to accommodate the worldwide pandemic. We’ve waited several months for this procedure while the medical field responded to the current COVID-19 crisis; i.e. it wasn’t on the approved, non-emergent surgery list. For us, this meant continuing to patch a few hours a day and convince Emerie to wear her glasses as much as possible, which is easier than this time last year, but still a fight.
All doctors appointments this spring only allowed one parent to attend, wearing a mask, with an attempt to keep all patients far apart to lessen the risk of spreading illness. The specialist appointment in late April was encouraging, with Dr. Winkle noting that he would determine which eye muscle to tighten once he was in there. Her eye was trending inward about 20%, as opposed to wandering outward as it did prior to October’s adjustment.
Unfortunately, when I took Emerie to her pre-op appointment last week, her left eye alignment is now trending inward at 50%, a significant change in about a month. This means that both muscles will likely need adjustment and he has shifted his prior surgical plan accordingly. When I asked why such a change in a short time period, he said sometimes this happens and there’s really no good explanation. If he had never done the first strabismus surgery, her eye would still not be aligned correctly (since I asked!). It also means that she is on the more severe scale for pediatric cases and will likely require additional surgeries going forward. Needless to say, I did not leave that visit feeling as optimistic as when we arrived.
All surgical procedures require a negative COVID-19 test within 48 hours of going in. I expected some screaming rage at the nose swab and had snacks and juice at hand as well as Bear and a wubbanub, but she did great! It was unexpectedly easy- we didn’t have to get out of the car and the nurse came down to our parking spot for the whole thing. She explained swabbing adults was more extensive than younger kids, and just swabbed her nostril and talked sweetly, evening producing a half toddler smile before heading back into the office. We found out right before surgery that her test returned negative, as we expected.
Emerie was ready to take on the day this morning. Little did she know where we were headed, but after Craig pulled her out of the nursery she was chatty and running around, even with our shhhhh’ing to not wake the other two.
We’ve had three prior surgeries at the surgery center and yet I’ve never noticed the pre-op playroom before today. Needless to say, Emerie much preferred exploring the enclosed room full of activities rather than be confined to my lap in the tiny pre-op space. Only one of us could go back into the area due to COVID-19 rules, so Craig waited in the waiting room out front while I went back with her. I gave her the purple, surgery monkey to cuddle with, which is almost as big as her, and she snuggled it, “changed” its diaper, and showed it the puppy book.
After the Versed kicked in she wanted to read her book on my lap, under her moose blanket. Adorably, she was super ticked off that she couldn’t shut! the door IN the book and kept repeating it. When I informed her we couldn’t shut the door, she told me no.
Also, the CUTEST thing ever….she wore two bracelets for her adventure today and look what colors they are! One pink and one blue, i.e. one in Harper’s color and one in Reagan’s. I melted when I noticed that! She is definitely the jewelry wearer of the three.
Dr. Winkle explained that the procedure would take a little longer the second time around, probably about 45 minutes versus the 25 previously, usually due to minimal scar tissue. He came out with an update about 40 minutes after I put her in the wheelchair and they wheeled her off.
The doctor noted that he was pleased to see part of the reason for the eye drift and decided to only tighten the outer muscle and not mess with the interior one as originally planned. He said she developed a type of scar tendon, about 5mm long, that was pulling the eye inward. This is actually good news, because he removed it and tighten the outer muscle, which was simplier than having to work on both sides. Hopefully this will keep her straight for a while.
Another hour passed before our surgical buzzer went off, allowing me to go back and see her. We actually saw Dr. Winkle come back out after his next procedure, looking surprised to see we were still waiting. The nurse told me later that they gave her a different type of sedation so she was coming out of it slower than her prior surgeries. I went back to find her still out. It took another 20 minutes or so until she started to come out of it. The interesting thing is that she caught me by surprise; she was out one second and trying to roll off the bed in quite a fluster the next. This is more-or-less how our naps go…fully asleep one second, screaming and wanting up the next.
Now that she is a bit older and more talkative since her surgeries at 19 months and 21 months old, she can better communicate her feelings and it is intriguing to see. Her first word was owie, of course, and reaching for her eye. The nurse asked if she wanted a yummy and handed her a lime popsicle, which for a few minutes fully distracted her pain and she laid on the bed, eyes closed, sucking on the popsicle calmly. At some point, about halfway through the popsicle, she noticed that the paper towel previously wrapped around it was on the sheet and frantically commanded trash! at me several times, then went back to owie and booboo, pointing to her eye. And repeat.
Eventually we made it home, after she threw away her popsicle wrapper in the trash without my assistance, had her blanket tucked on her, monkey and binkie in hand in the car, and we did our usual surgical routine of taking a short nap to settle and let more Advil kick in. She definitely went to sleep easier today than back in December and didn’t fight it or cry. As I write this, she’s down for her normal nap, although her eyes on the crib camera tell me she is fighting this one hard while Harper and Reagan are both out.
Thank you, everyone, for the prayers. Our littlest triplet was very brave today and behaved great! <3<3<3
Last week we took Emerie to her eye specialist visit, that was conveniently scheduled out far enough that it wasn’t canceled or postponed due to COVID-19 closures.
The doctor’s office required I wear a mask and only one parent accompany the child. The one-to-one ratio is pretty fantastic and when the kiddo is well behaved, it’s even better! Emerie was a pro and you can tell that she likes Dr. Winkle. Not only did she sit very still on my lap while he checked her eye, but he also managed to get a few smiles, almost chuckles, out of her with some animals sounds. She took out on of the tools on the eye machine and nicely handed him his “toy” upon request.
The good news. She was great at her appointment and the eye patching is strengthening her eye. The bad news? Her eye muscles will require another surgery later this spring. Typically the over correction of the eye muscles accommodates the loosening over time, so that the eye ends up looking nice and straight. Since October’s surgery, her eye still trends inward a little more than it should and by now it over correction should be fixed. Dr. Winkle noted he would decide once she’s in surgery if the inside muscle requires loosening or the outside should be tightened.
I am hopeful that much of this quarantining will be passed us before she goes in, so her immune system doesn’t have to fight off any other potential invaders. Current rules also state that only one person is allowed back with a kiddo and that can be tough with a very unsettled and in pain toddler.
Harper and Reagan received their two year eye checkups with the specialist this week, more-or-less to confirm that no strabismus issues are present like their sister. The doctor did not appreciate that they were dressed alike, but did think it was funny! Both passed with flying colors and no longer need specialist eye care. Going forward, unless something changes, we will just monitor their eyes at the pediatrician. Great news!
Harper did well with the dilation drops and didn’t fight the doctor for the visit. She sat still on my lap and he examined those beautiful blue eyes without too much effort. (Random fact: light colored eyes like blue react easier to dilation!). Reagan, on the other hand, feels the way Harper feels about the dentist. Screaming, crying, trying to hold those eyes shut. She did not appreciate the drops and had her eye exam with arms held firmly down by Craig and her eyelids pried open by the doctor. Maybe we should be more appreciative that Emerie doesn’t respond to all the doctor visits like this.
They both had dilated eyes for the rest of the afternoon, but still enjoyed playing out in the sun and going for a family walk.
All in all, things are pretty good in terms of the Douglet eyeballs. We will continue to patch Emerie two to three hours per day and encourage use of her weaker eye, much to her dismay. The next plan is to purchase another pair of glasses with larger lenses and see if she likes them more than her current ones or if they improve her mood. We are also thinking outside the box…maybe getting a yellow pair instead of her usual purple! Either way, we know they will be cute on her.
Keep those prayers coming; and we will keep you all updated on her progress.
We are in a new stage where the girls don’t want to do many of the things they’ve been doing for months. For example, they don’t want to eat unless you feed them, they don’t want diaper changes and flail around like angry alligators when you change them, and they don’t want to wear their clothes but also don’t want them off. They certainly can’t seem to decide what they want!
This is making the day-to-day a lot more interesting, in a not-so-great way. These new habits change daily (even hourly!). At dinner time they will eat a couple pieces of the food set out before them (type varies each day) and then throw everything else on the floor, no matter if they love it or not or are starving or not. In fact, they refuse to eat any more unless someone sits there and feeds it to them, bite by bite. Looks like we are back in the baby stage on this one, at least for the moment. Let’s hope this doesn’t last too long because it’s mildly irritating and takes so much longer.
The good news on this feeding strike- everyone still enjoys a variety of healthy foods (when we feed it to them), including:
Broccoli: the current obsession with steamed broccoli is REAL.
Green beans/blueberries: they’ll eat a few themselves before starting the dodge ball match with you. Two of our main foods.
Mushrooms: this recent discover is a surprise, they are all thrilled to eat this off our forks and will eat ALL our mushrooms. Even a large container!
Corn: canned corn is a hit…sometimes they’ll eat it themselves for a handful of two.
Apples/grapes: we rediscovered these fruits last week and they chomp down both at snack time.
Blue corn chips: okay, not super healthy but they LOVE them.
Avocado: this is hit or miss right now, this has been a favorite food for six months now but lately it’s been floor decoration.
Sour cream: not really that healthy, but weirdly enough they will take a bite of anything smothered in it. And they will yell at you until more is shoveled into their mouth.
Fruit and veggie pouches: this is the go-to if we can’t convince anyone to eat their meal. Luckily they still like these and will chow down.
Yogurt: the funny thing is, they love yogurt and they love blueberries, but they do not love blueberry IN their yogurt. Sometimes I can sneak them in for Harper, but Reagan and Emerie will swallow the yogurt and deliberately spit out the berry with an offended glare at whoever is feeding them.
Reading that list doesn’t sound so bad…if they’d go back to feeding themselves. It doesn’t appear that teething is the issue and no one is sick, so that makes us believe that it is a mental game that they are testing us on. I was just getting used to handing them food and them eating it, even with the typical mess! And while the dogs very much enjoy this new trend…I would prefer to go back to them actually eating. Time will tell.
Most 1-year-olds dislike diaper changes and ours are no exception. Even with our “distraction” method, they still holler and try to get away from you. Since potty training (hopefully) is right around the corner, we are compensating for this rage by rewarding them. Once dressed they get the honor of throwing away the dirty diaper all by themselves…running into the kitchen and waiting for us to open the trash compactor so they can toss it away. Then they “help” close it and get a high five. This small task brings about a lot of toddler enthusiasm; although they are now fighting over them because everyone wants to participate, even when it isn’t their dirty diaper.
At meal time Emerie and Reagan always try to get their shirts off; Harper will join in when she sees her sisters do it. Thankfully they aren’t always coordinated enough to succeed; but, of course, this brings forth rage. And don’t even get me started on bibs…that ship has sailed.
Emerie is the anti-socks and shoes baby; she is the first to pull them off and will not wear socks in the house. Occasionally we can keep her indoor booties on. Craig thinks this has something to do with a dislike of socks that have the little grippies on the bottom. She is also mastering removing her shoes in the car.
Another comical thing- since Emerie dislikes socks so much, it means I am not “allowed” to wear them inside either. If I’m sitting on the floor and wearing socks (this is Alaska so I usually am), then she is at my feet trying to pull them off. She’s converted Harper to this idea and they team up; the two of them will insist on removing everything from my feet each night and either try to wear them or throw them down toward the laundry area.
Harper doesn’t mind her shoes, but won’t leave on any zippered coats or hoodies unless fully occupied with other things. She knows how to unzip her coat and will do so by the time the other two are suited up and ready to go. Now grandma just needs to teach her to re-zip it!
Reagan doesn’t seem to have an issue wearing her shoes or coats, but dislikes hats and really dislikes gloves, even on cold walks!
The girls are learning how to break a few more boundaries, such as reaching things on the counter they couldn’t touch before, climbing on higher surfaces while staring you down as you tell them not to, and opening the higher kitchen cabinet drawers that were never noticed (or locked) in the past. Reagan is convinced she should be allowed behind the baby gate in the living room when we are in open play mode- that area is blocked off by floor tiles and mini kid chairs. She keeps figuring out how to get back there and then gets stuck and mad about it. I believe we are right around the corner from another living room rearrange. We have an electrician coming out next week to raise several outlets so we can be a little safer and still plug things in.
So about five minutes after the nanny left yesterday, before Craig returned home from work, I turned around to this. In t-minus five split seconds someone (I’m guessing Reagan?) pulled this bag off the counter and sprinkled them everywhere. Then everyone, you know, who won’t eat for us…sat on the floor and enjoyed a marshmallow and dog hair snack together. We will now be pushing everything farther back against the backsplash. The good news is that everyone was completely willing to help me pick up the rest of them and set them into a bowl. I only stepped on the handful we missed for the next hour or so…good times. Here’s a fun reaction to me seeing the mess!
Emerie Eye Update
I took Emerie to her four week post-op checkup on Monday. The doctor wants to see us back in two months, after the holidays, to reassess if a third surgery will be necessary. While her eye isn’t trailing now, it hasn’t eased out as much as we hoped and she still looks a little cross-eyed at times. We knew this was a possibility and he intentionally over corrected during surgery in hopes it would center out on it own. There is now about a 50/50 chance we will require another one to loosen up one more eye muscle a bit more. There is also a possibility she will need another correction later; it could be five years, it could be thirty, only time will tell.
So for now, we keep doing what we are doing. Two hours of patching per day, more if she’s taking it well and forgets it’s on. Some days it might be a little less, because she’s either super grumpy or taken it off several times already. We continue taping each side of her glasses with medical tape, because she (or her sisters) won’t leave them alone otherwise! Minor progress, because we don’t have to put tape over the eye patch and the glasses now; the glasses help hold it on enough that she usually leaves it alone, at least for a while. And after patch time, she gets to hold her prize because she handled it like such a big girl!
With an opening in the doctor’s schedule for Emerie’s upcoming surgery, we pushed it up to today instead of the following Tuesday. The first procedure in June corrected her blurred vision by conducting a lensectomy and removing the cataracts in her left eye. The surgery then added a new lens and we’ve worked with patching to improve her eye use.
Today’s surgery, called an eye recession and resection, focuses on the muscles that control her left eye and will correct the lazy eye effects still hindering her. This is not considered a cosmetic surgery; while it repairs the look of a lazy eye and makes it less noticeable, it more importantly encourages her brain to use the damaged eye more and improves its focus and function. That is far more important than simply making it less visible to others, although that is a perk! The exterior eye muscle will be loosened and the interior one tightened to draw the eye in and minimize the wandering. The procedure is less invasive than the prior one but does result in a red, irritated eye for a couple of days.
There is a possibility she will need a third surgery in the future to do the same correction, as lazy eyes often shift back to some extent. With the nature of her eye issue, this is something that can be likely, but we won’t know for a while and it doesn’t happen to everyone. For now, straightening things out will hopefully assist her brain in using the bad eye even more than it currently has. We will continue with two hours of patching (of the stronger eye) each day and hope visibility improves.
As I wrote this, Dr. Winkle came out with an update that everything went well and she is in recovery. She went back with him about 7:40 and was done by 8:25. Pretty quick! Just enough time to get donuts… after another hour we headed back to post-op and helped settle her before going home for the day.
Emerie was much more active this time around, so we wandered around the lobby when we checked in, she even helped me with my purse. Back in the pre-op area she did not want to sit still or be contained, even with the Versed medicine. In typical Emerie style, she spit some of that medicine right back in Craig’s face as he wrestled to give it to her. He can tell you that it doesn’t taste very good. She eventually became woozy from it, but still wanted to move around. Last time she just snuggled!
After her meds she sucked down a tiny cup of water. That plastic cup entertained her for a good 15 minutes, making her giggle as it crinkled against her teeth. It made for some silly pictures (see below!). She would not let the nurse take her forehead temperature, fought the anesthesiologist on checking her heart and lungs, and decided the pulse finger machine was permanently hers. In fact, the pulse machine went back with her into the operating room because she was literally not giving it up. She also got to walk back there with the doctor, not a nurse like last time.
I made the mistake of sipping my coffee thermos in front of her that was not appreciated, especially with the no food or drink rule before a surgery with anesthesia. Mental note for next time: don’t do that in front of her!
The dog walkers took Kalli and Koda for some adventuring this morning while we were out, hoping to tire them enough for calm puppies the rest of the day while Emerie settles in. Harper and Reagan get nanny and grandma playtime while I snuggle with Peanut.
For now, we are home. She was much happier in post-op than last time around. Instead of upset and crying, she was snuggly and very sleepy. She slept on the car ride home and is now totally out on my lap in the nursery.
Thank you everyone for the prayers and encouraging words for Miss Emerie. ❤