Endo, adeno and I

Amid moving, taking care of the trio, unpacking, and now a kitchen renovation (yay, but holy crap that's stress*&^#!!), I have been dealing with immense pain. The kind of debilitating pain that has me doubled over just to catch my breath.

I have a high pain threshold, but I'm telling you, if I didn't have kids to take care of, I'd have made several trips to the ER these past few months. I suspect a cyst ruptured the one night, because I was in even more pain than usual.

The pain comes on when I'm upright for more than 5 minutes, and I can only describe it as feeling like I'm in active labor. It literally feels as if my insides will fall out if I don't crouch down or lay down. Then, after being seated or stretching/twisting my body, it subsides long enough that I can function again, but the pain never goes away completely.

After decades of living in pain and just thinking it was completely normal, I was diagnosed with Endo in 2008 during a routine fertility workup. The RE who performed the surgery was shocked that it was actually stage 4. (There isn't always a correlation between pain level and the stage of Endo.) I consider myself very fortunate to have been pregnant and carried a triplet pregnancy.

Naïvely, I bought into the false hope that pregnancy would stall the growth of endo, and therefore ease the pain. It did go well for a while there, but the relief of the operative laparoscopy and pregnancy only lasted until a few months after the C-Section. It's been downhill ever since, with each month being more excruciating than the one that went before. Mostly, I've been too busy to take care of myself. Until I could ignore it no more.

I have pain from hip to hip, and from my ribs to my pubic bone. Sciatica-type pain in my legs from time to time, back pain, and constant nausea. The pain and nausea is very similar to what I dealt with prior to the laparoscopic surgery, which leads me to believe that I may have bilateral complex cysts and additional adhesions again. But this time, there's also an additional layer of pain I have never felt before.

On the day that we moved (crazyness!), I went to see a specialist. Just imagine, for a moment, the logistics that entailed. Me being able to sneak away while my husband and best friends continued loading the moving truck and took care of our kids.

The surgeon suspects that I have both endo and adenomyosis (that's when the lining of the uterus grows directly into the muscle wall of the uterus). I will be going for an MRI with contrast on Friday, and the surgery is scheduled for the end of the month. They wanted to do it a few days after my consult, but I needed to unpack and get the kids settled in our new house first.

I have no idea how I'm going to care for my kids after the surgery, but my kids' godmother (one of my closest friends in the world who should be considered for sainthood) has offered to care for them while I recover. She is an amazing parent and my children adore her and her family. They will have a blast, but I'm not quite sure how I'm going to remove myself from the party.

If the surgeon can't diagnose adenomyosis with the MRI, then I have the option of not undergoing a hysterectomy just yet, but having the adhesions resected again. If the MRI is positive for adenomyosis, then a hysterectomy is advised. Of course, I can choose to do nothing and continue the charade that I'm coping. I'm just really frustrated with the pain. It has worn me down to the point where I see no alternative.

I always enjoy reading every single comment, but if you struggle with endo or have had a hysterectomy, I'd definitely like to hear from you.

Are they or are they not? DNA Test Results Revealed

Proactive Genetics analyzed 15 standard DNA markers used in human identity and Julia and Emma matched on all 15. They are indeed monozygotic ("identical"). The probability of them being monozygotic is estimated at 99.9%.

I'm not quite sure why this feels so life affirming, but it does. Possibly because their behavior has always lead me to believe they could be identical, while their looks dissuaded me. It is such a relief to just know. To not guess, to not analyze, to not question.

We have always known that we were incredibly fortunate to have conceived triplets, to have safely carried all three until 32.6 weeks, to have three preemies with only minor health issues, and to have shared the past two and a half years with them.

What we didn't know, is just how infinitely blessed we were during IVF. We now know that only two of the embryos that were transferred actually implanted, and that one must have split. The split most likely occured a few hours after our Day 3 transfer.

The 3rd day after fertilization is the latest possible time that scientists say zygotes can divide and form separate chorions and amnions. Our girls were trichorionic, triamniotic, meaning each had their own placenta and amniotic sac.

Our triplets are therefore referred to as "polyzygotic" meaning two are monozygotic "identical", and one is dizygotic "fraternal."

We can now also definitively say that Julia and Emma are mirror identicals. About 25% of "identical" multiples mirror one another in terms of hair whorls and handedness. Only monozygotic multiples can be mirror images of one another, and they are amongst the most identical-looking of monozygotic multiples.

It is a tremendous feeling to have this insight into their conception. While we have always treated all 3 girls equally, it feels like this DNA test result has shed light on their natural way of being around one another, and interacting with one another. Julia and Emma seem to crave a physical proximity to one another, while Ada seems to need and seek space by herself. They love one another equally, and all take turns playing together. It will be amazing to watch their dynamic and relationships evolve as they grow. I feel like I now have a deeper understanding of how best to nurture each child.

Out of the mouths of babes

The kids make me laugh out loud a bazillion times a day with their witty observations and funny sayings. Sometimes they'll apply knowledge to a completely new circumstance with hilarious results. Or mispronounce something and be unintentionally funny.

They're also starting to say rather embarrassing things when we're out in public, which I'm sure will only intensify as the months go by.

Hooray for talkative 2-year olds. As you can tell by these quotes, it's been a lot of fun lately.

-- May sayings --

Ada's recap of a friend's 3rd birthday party, "I rode the roller toaster. Fast. Many times."

An older gentleman brought his granddaughter to the play area. Emma immediately noticed his black eyepatch and said (loudly), "The grandpa is wearing an eyepatch." I said, "Yes, yes, he is" while trying to think how best to respond and explain. Before I could get another word out, Julia shouts from across the play area, "He must be a pirate!"

Driving around the other day, Julia said to the oncoming traffic, "Truck, please give us space!" (She says this to her sisters when they bug her.)

We were admiring dogs at the dog park, when Emma looked at her sisters approvingly and said, "We're a pack of sisters." This one makes me feel all warm and fuzzy everytime I think of it.

Julia was batting her eyelids and said, "My eyes are feathering."

Ada, "Hooray! Mamma back from libwawy. New books. So 'cited (excited)." May it forever be this easy to bring joy to my children.

Julia is singing, "Little red caboose chug chug chug..." Emma says, "Julia, can you sing quietly?"

One of the little people passed gas. "Oh, that was a loud burp. Say 'scuse me!" says Julia to her sister, who shall remain unnamed.

Julia was pretend playing with a little plastic dinosaur and I overheard her say in a funny voice as if the dino is talking: "I'm a dinosaur. I can poop in the wild." We're not potty training yet, because I want to wait until after we move. However, there's been lots of conversations about animals and humans, and who does what where.

-- April sayings --

Trio in the bathtub filled with bubbles and Julia says, "Let's have a snowball fight!" I nixed the fun just as she smeared a handful of "snow" over Emma's face, and Ada simultaneously targeted Julia's eyes. Cue chaos!

Julia is jumping and falling in their play tent, surrounded by soft toys. I ask, "What are you doing?" She says, "I'm rocking and rolling" as she takes a tumble.

At bedtime, a friend asked Emma what she plans to dream about. "Old hat, new hat?" asks my friend, based on The Berenstain Bear book they just read. "Chocolate," answers Emma emphatically.

-- February --

Kids are waking up, chatting in the nursery. I'm standing in the hallway, just listening. I hear, "No way!" from Julia. "No way!" says Ada. "Yes way!" says Emma.

There have been many, many more, but I'm usually too busy to write them all down.

Identical vs. fraternal... continued

After that last post about Julia and Emma's similarities, I also want to point out how interesting it's been to watch Ada interact with her sisters. She knows who is who, she knows who sleeps in which bed, and which sippy cup belongs to which sister. She gets it right 99% of the time.

But every now and then, they'll all be running around, and she'll lose track of who she thought was where. Then she'll yell at Emma for taking her toy, while it was Julia, or vice versa. Emma usually prefers to sit in the back seat of the van, but the other day, she chose to sit up front with Ada. Ada is obviously used to having Julia next to her. Ada looks at Emma who has fallen asleep next to her, and says, "Julia is sleeping." I say, "Nope, that's Emma who is sleeping!" Poor Ada looks utterly confused and perplexed, and says, "There's so many Emmas!"

Now when we accidentally use the wrong name, we joke that there's so many Julias or Emmas. Please excuse my amusement at Ada's expense - it's just so darn cute.

In our defense, Julia will look at herself in the mirror, and say, "Hello, Emma!" or Emma will look at herself in a picture, and say, "That's Julia." Apparently sometimes they can't tell themselves apart either. When all three appear in a photo, everyone knows who is who. However,when I show them a photo of either Julia or Emma, all three of them will get it wrong 50% of the time. So clearly they're just guessing and don't really know.

I find all of this completely fascinating, because even if they're proven to be all fraternal, I do think Julia and Emma share a lot of the same DNA. My guess is that they could be mirror identicals, based on their opposite handedness and opposite hair swirls. Interestingly, their hemiparesis diagnoses is also opposite. Ons has a mild left hemi diagnosis and the other a mild right hemi diagnosis.

I've read that the gene expression can be about 5% different in identicals, and I'm always wondering if that is what accounts for their differences. I realize nurture and epigenetics play a role too. Although, given that they've been in the same environment since conception, I do not know how much weight to place on nurture being responsible for differences.

There are several factors that increase the likelihood of having identals. Not only were my eggs older when we completed our 2nd fresh IVF cycle, but we also had to do intracytoplasmic sperm injection (ICSI).

Interestingly, I also have two sets of twin cousins on my mother's side of our family, but it never crossed my mind that we could become parents to multiples. We were just trying so hard to conceive, that having multiples seemed like an impossibility. Having Higher Order Multiples seemed utterly farfetched.

We definitely hit the baby jackpot, but if it turns out that Julia and Emma are identical, I think it will just underscore how incredibly fortunate we were to have had these three amazing kids at all.

Are they or are they not?

We were told by ultrasonographers and neonatologists that our triplets are fraternal because they did not share placentas. Ever since their NICU days we have thought that Julia and Emma looked a lot alike. Although I've always been able to tell them apart, and they don't look truly identical to me, we have had strangers, family and friends comment on how much they look alike. It wasn't much more than a curiosity, though.

Emma's face is rounder than Julia's, which is more oval. Then I read about an OB who said that the face shape has no bearing on identicalness, because the space in the womb can alter that.

They both have birthmarks, but Ada does not.

And still people kept asking, and I kept shrugging it off. Although, for the first week they were both home, I kept their hospital bracelets on them. I was afraid I would mix them up in the middle of the night. Every once in a while, I'd come into the nursery after my husband or a friend had laid them down, and find the "wrong" kid in the "wrong" bed.

Then Emma and Julia would start doing uncanny things.

One day, Emma stubbed her toe right next to me while Julia was down the hallway in their bedroom. When Julia came running into the room a minute later, she told me that her toe hurts. She pointed to the exact same toe on the same foot.

Sometimes, they'd sit with their backs facing one another, and have the exact same expression on their faces. They find the same things funny, silly or sad, whereas Ada has a terrific, but completely different sense of
humor.

They'd master a new skill the same day while Ada was months ahead or behind, they'd repeatedly echo one another's sounds, while Ada would be off elsewhere in the room paying no attention.

For the longest time, I couldn't tell their cries apart, whereas Ada's cry was very distinct. They cut most of the same teeth on the same day or a day apart, whereas Ada's teething pattern was completely different.

Julia and Emma would lie curled up the same way, facing the same direction in bed at the same time, sound asleep.

I'd be walking them in their stroller and looking at their hair swirls. Their hair would naturally part in exactly the same spot but in opposite directions, while Ada's was curling in its own fancy way. The hair swirling actually makes me wonder about mirror twinning. I am so intrigued by this!

I'd often confuse them when looking at them from the side or behind. That still happens, but now they speak up! The other day, I called Emma's name at the park, and a little voice from right next to me said, "Mommy, that's Ju-hea. Emma's wight here." I often feel that I should just know intuitively who is who without looking, but sadly that has not been true when they're not facing me.

At the doctor's office, their weight and height once matched to the third decimal. I thought they had made a mistake entering it in the computer system, but then the nurses showed me where she wrote it down on the sheet where she weighed them.

We took them to the opthalmologist for their ROP screening when they were only a couple of months old. Ada was cleared by the NICU, but both Julia and Emma needed to go for follow-up. The opthalmologist said, "Now these two are identical, right?" And I answered, "Hmmm. No. They're fraternal." He looked at me quizzically, and said, "Because they both have the exact same unique corneal shape and astigmatism." So that got me thinking. Could they be identical after all?

I started finding articles that explained if the egg (zygote) split early enough (between day 0-3), multiples can develop to have separate placentas (chorions) and sacs (amnions). Our girls were trichorionic triamniotic, meaning they each had their own separate placenta and amniotic sac.

Suddenly, I remembered how an ultrasonographer had once commented - very early on - that they were fraternal, but that two almost looked like identicals because one sac was off by itself in one area of my uterus, while the other two were closely huddled together.

Often, we'd go to an ultrasound, and the two little beans in the sacs closest to one another, would be floating/lying the same way. We had different ultrasonographers comment on that over the course of my pregnancy, yet nobody ever mentioned the possibility that up to 30% of multiples in separate sacs are identicals.

To this day, how they were in utero, is how the triplet grouping has worked in our house. Ada is off in the corner of the room playing her own game, and Julia and Emma are sitting within two feet of one another, parallel playing the same game.

Julia and Emma always want whatever the other has (color, type of toy, everything has to match), while Ada insists on something different. I'd have sets of clothes that coordinate, and allow them to pick. Ada will pick, and then Julia and Emma will fight over the same outfit, even though there are 2 similar ones left. They almost always end up wearing the top of one outfit and the bottom of another and vice versa, by choice, so they can match instead of coordinate.

They find the same games and songs interesting, whereas Ada prefers to occupy herself with sorting and figuring out mechanical things. Ada is very analytical, whereas Emma and Julia are very creative. Ada will tidy up, while Julia and Emma prefer chaos. This creates huge amounts of frustration for everyone involved, including me.

Everytime we go somewhere, I am asked, "Are these two identical?" I always feel embarrassed to say that I don't know and only a DNA test can determine that definitively. After 2.5 years, I have finally decided to order a DNA test from Proactive Genetics. I ordered it online, and received a kit in the mail a few days later. Basically just 2 tubes with liquid in them, with a label on each with the kids' names. There were also 10 cotton swabs for each kid, but we only needed 8 per kid. We swabbed 2 left and 2 right on the inside of their cheek before dinner, and 2 left and 2 right each the next morning.

Now, if you have multiples and would like to have them tested, I suggest you do it before they're toddlers. Even though it doesn't hurt, I had to try every imaginable game in the book to get them to hold still long enough to swab them (3-5 seconds per swab). In the end, I was sweating and the extra swabs were strewn across the floor. Pinning down an uncooperative toddler is not for the fainthearted.

In about a week to 10 days, we should finally have an answer. Although there aren't any pending medical reasons to know, I am looking forward to just knowing, and being able to tell them the truth as they grow up.

Moving on

Our life has been a whirlwind the past few months. We were in search of a home to buy, and have finally found one we like. It's a fixer-upper, and we're currently waiting to hear which of the repairs the owners would be willing to make. We have a laundry list of issues that need to be fixed, but the good news is that everything is fixable. No foundation or other major structural issues. We like this house enough to deal with the repairs and updates.

The elementary school is one of a handful of blue ribbon schools in our state. We feel that it would be a great place to raise our kiddos.

Things haven't been quiet at our rental house. The owner decided to put it back on the market, so we are currently dealing with the logistical nightmare and invasion of our family's privacy with daily showings. Trying to keep a home "picked up" enough to show while chasing down 3 toddlers has been pretty stressful. I've just tried to put my kids' needs first, and not care about what strangers think. You grow a thick skin pretty quickly when you have triplets, and learn to deal with the stares and comments. Thankfully, the families who have come to view the property have been respectful.

On a few occasions now, the scheduling service has called me with less than an hour's notice. Bla. This morning I put my foot down, because it's such a disruption to work around potential buyers' schedules instead of around my kids' schedule.

All of the above pales in comparison to how challenging it's been to live in a rental home with young kids. Everything has just been a few degrees harder than it needs to be this past year. I can't wait to be able to bolt furniture down that can topple over (it's stored right now), to have all of the pieces of furniture back where it belongs and where I need it, to have closets and cupboards where I need it instead of having 75% of our belongings stored, and to have functioning appliances again. Most of all, I can't wait to get out of this split-foyer house where we have had to dance around one another - and the door - to get in and out of the house. Greeting guests and bringing groceries into the house has also been much harder than it would've been in pretty much any other home layout. Whomever designed the split-foyer floorplan should be punished.

I am really looking forward to not having steps where the foyer should be. To have room to not only swing the door open, but to be able to easily get around it with 3 little people. That alone will make our lives 100% easier.

I'm dreading the upcoming move itself, but very excited about the prospect of having a home of our own again.

28 Months - My head is spinning

Two quick stories, and then a more in-depth look at what life is like today, with 28-month old triplets.

The kids received a bird clock for Christmas, and when a bird chirps, on the hour, every hour, they'll say that it's, "breakfast time!" "reading time!" "snack time!" "bathtime!" or whatever it is they're busy doing. Yesterday, Ada was playing with a toy when her sister took it from her. She started to cry, and just then a bird chirped. Through her tears, she declared, "Birdie says it's crying time!" It's a day later, and I'm still laughing.

***

About a week ago, the kids were in their bedroom, waking up. All I heard was Emma talking. Then Julia said, "No way!" Ada said, "No way!" and Emma responded, "YES, WAY!" They crack me up daily.

***

Watching the communication between them, and their growing sisterhood, is just amazing. Sure, they'll try to whack one another over the head with a toy, pull a sister's hair, occasionally lean in for a bite, and exhibit all sorts of toddler behavior that is both typical and frustrating. But they are also doing splendidly.

As of today, they no longer receive PT services. Julia and Emma are speaking in full sentences, in both languages, and Ada is regularly putting 3-5 words together. Julia and Emma's vocabulary is growing beyond the point where I can track it or count how many words they know. (It was over 400 words six months ago. Now it's definitely way way over a thousand, if not more. I can't think of anything they don't say!) Ada's language skills have blossomed the last couple of weeks as well. She is probably where her sisters were 6 months ago when they were evaluated. (They are ahead, she's on track.)

I rarely come to a standstill long enough to post here anymore. I feel usurped by our life, and I'm just kind of going with it right now to survive.

We are on triplet time day in and day out, which to me feels like everything is happening three times as fast. I'm constantly playing the part of strategist, negotiator, offense, defense, team medic, janitor, physical therapist, psychologist and any other role you can think of.

It actually feels like I haven't stopped to catch my breath in 3 years.

And it's no wonder, because when I do think about it, I went from stage 4 Endo surgery to 2 back-to-back IVF flare cycles, a high risk pregnancy, HELLP Syndrome, shingles, hematoma, 3 preemies in the NICU, 3 refluxers at home, a year of pumping breast milk, 3 CP diagnoses, speech, PT, OT, to an interstate move, adjusting to being a SAHM, and living in a rental house that's impossible to childproof adequately. (It's anxiety-inducing.) I am in that place that doesn't have a name. The one that is beyond burned out.

I now spend most of my days feeling utterly overwhelmed by toddler tornadoes, cleaning up what they left in their wake (they help, sort of) and trying to stay a step ahead when all I want to do is take a nap. But somehow I keep chugging along. When I take them places by myself, strangers often ask me how I do it, and they are always surprised when I don't pretend to be superhuman. On a particularly challenging day, I answered somewhat embarrassed, "Oh, I've already cried once today." And the mom shot me this look that was part relief and part empathy. Having triplets creates this sort of parenting no man's land that can be quite isolating.

I can't describe to you the level of multitasking it takes to have 3 same-age toddlers. It's like taking the most challenging multitasking jobs you've ever performed, but trying to perform them in an ever-changing office where nothing stays where you put it, with a soundtrack of maddening whining, the worst unpredictability you've ever experienced, serious distractions that can't be ignored or prioritized, and needing to run interference while trying to also cook, teach, and generally keep the show on the road. I have worked in fast paced environments, high stress jobs, and I'm no stranger to multitasking. But this is kicking my butt. Daily.

They are always taken care of, but I forget *my* bag/cell phone/car keys, etc. if it's not strapped to my body while I'm out with them. My brain's capacity is taxed to the max just keeping track of them, their needs, and their stuff and there's nothing left over for anything else. Sometimes I'll have everyone loaded in the car (after dressing and wrestling 3 octopi into winter gear: 6 socks, 6 boots, 3 hats, 6 mittens, 3 coats, 3 books to occupy them with). Then in that moment before I turn the ignition, I'll finally have a second to think and realize that I forgot something for me. Usually, I just say in my mind, "Screw it! We're leaving NOW before everything goes to hell in handbasket." And THAT is how I end up without water or food for me, without my cell phone, or like the last time: without my wallet. It is HARD doing this alone all day, without a support system.

Just having a moment to gather one's thoughts is such an indescribable luxury these days. Day-to-day is easier in many ways than when they were infants (we're finally sleeping!) However, the cumulative effect of being chronically exhausted while having to care for toddlers makes this harder than I ever thought it would be.

There is MUCH to celebrate in our lives, and I'll hopefully have a chance to voice that soon, but I just needed to capture my feelings today and the reality that is right now. I want to be able to look back on this in a few years and laugh.

Even in the midst of this chaos, I never forget how fortunate we are. How inexplicably blessed we are for having three healthy children. That thought alone is what motivates me to be the best mother I can be, even when I feel incapable or inadequate.