Snoring

That’s what I’m currently listening to…my husband snoring with Orphan Black in the background.

Our babies are 17 months old!  Holy cow!  Little A is walking, running, wandering, all over the place.  Our toddler is really a big boy now…he loves Coldplay more than any kid has ever loved Coldplay.  He says that Chris Martin is at our house, eating dinner with us, etc.  He talks constantly and enjoys getting in his sisters’ faces and screeching.

Baby B is still in her loop of therapies and doctors’ appointments.  She saw the GI doctor, who, between exclaiming, “oh, she’s such a flirt!” and “she’s flirting with me!” (ew) mentioned the possibility of a GI tube for feeding.  He said that many parents do this because it’s more convenient for them to tube-feed a child who’s having feeding issues.  She’s trying to eat more and she’s getting better at it…sometimes.  We’re definitely not going to consider that unless she’s losing weight and not thriving.  We’re also going to see another GI doctor who isn’t so creepy.

She also went from “she’ll definitely need a new kidney in 3-5 years” two months ago to “I think she should be able to make it until age 10 without dialysis or transplant.”  So basically, it changes constantly.

Her recent brain MRI results show the large areas of damage, mostly on the left side and in the center of her brain.  Seeing those images is so scary.  She really does amazing things, much more than it appears she might from the images.  She has a lot of grey matter intact, so that is positive.

Other than that, we’re SSDD here.  Other people dream about going on vacation, but I dream about returning to legal work.  We still can’t figure out how to make that happen while B has so many appointments and therapies, but maybe at some point soon.  Our son is going to pre-k in the fall, so that’ll really change the daily routine here.  I look forward to seeing him interact more with other kids his age and learn how to follow rules a little better.  He’s so headstrong and argumentative; it’s exhausting.  That’ll be the hardest part for him, I think.  He already can read quite a bit, and he knows so much…he just has to figure out how to listen a little better.  But hey, we probably all need to learn that lesson, too.

Catharsis

I guess I needed to take a break from writing the blog for a while.  Once I got out the traumatic story of how my girls got here, I felt so much relief.

Now…my girls are great.  We have a routine, and life isn’t always bleak.  Baby A is walking, saying lots of words very sweetly, like “bawwwwwwllll” (ball) and “yesh” (yes), and exploring everything she can.  Baby B is grabbing toys, smiling sweetly, and saying “Hiiiiiiiii,” “ba-ba,” “Dada,” “bru-ba” (brother) and (if I’m lucky or if she’s really upset) “Mama.”

Big brother is officially four and a half.  He loooooooooves Coldplay.  I mean LOVES.  He wants to listen to Coldplay (all the albums, thanks to Amazon Prime streaming) all the time, watch Coldplay videos on YouTube or through Vevo, dress like Chris Martin, talk about Chris Martin, and pretend that Chris Martin is visiting our house and they are putting on a concert together.  It’s toooooootally normal.

I’ve also been able to connect with another TTTS momma who has gorgeous girls who are similar to my beautiful babies.  It was so nice to meet someone who KNOWS.  I immediately felt like someone understood what I was going through, and it made me feel a little better.  It was weird, but I felt like seeing my new friend with her girls just proved that we can get through this.  Everyone has their own struggles.  We’re so blessed to have our sweet babies here at all; they are truly miracles.  It took seeing another mom getting through to realize that I could, too.  I’d never look at her and think that she should be sad about the cards she’s been dealt, so why would I look at myself the same way?  Sure, things suck sometimes, but hey — I’m mom, and I have to do everything I can to make my babies’ lives better.  Whether it’s buying a Coldplay poster, reading books, or advocating for a corner chair, it’s up to ME to do it.  I don’t feel as sad that I’m not working as a lawyer anymore (except when I look at our bank accounts :P), because I know I need to be doing exactly what I am doing right now.  Yes, there will be days that I’ll feel down, but they are fewer than before.  Little B is OK.  She amazes every therapist and medical provider she sees.  Her huge smile makes other people smile, too.  Sometimes, that’s all I need to get through…that and a serenade from my Coldplay-loving son and a sweet “I la yooou” and kiss from Baby A.

Eleven Months

Our precious girls are eleven months old now!  Little B seems a bit happier overall, and she’s starting to gain more use of her hands.  She can grab things and play with some toys.  We’re still working on feeding, as she has trouble swallowing unless she’s fully supported.  We’re trying to get a feeding chair for her to make it easier for her to eat.  Last week, we went to Shriner’s Hospital in Tampa for an evaluation.  We were really impressed with how kid-friendly it is, and everyone was so kind to us and sweet to the babies.  The nurse practitioner ordered x-rays and said that little B’s spine and pelvis look good so far.  They will continue to monitor her to make sure that she’s not getting out of alignment.  In the meantime, they prescribed a foot brace so her feet won’t stay pointed.  Apparently, that is one of the issues that kids with cerebral palsy have, so we want her to be able to stand and (hopefully) walk normally.

She also went to the ophthalmologist on Monday.  My husband’s parents live close to the Palm Beach Gardens office of Bascom Palmer, so they met up with us to help wrangle the other kids while I went into the office with B.  The doctor (rightfully) let me have it a bit about not patching her eye like we should.  Apparently, because her brain is relying so much on her right eye, if we don’t patch and force her to use her left eye, she could go blind in that eye.  He had a hard time seeing her optic nerve to know if it’s paralyzed or has damage that would mean that patching wouldn’t work, so she’ll be undergoing an examination under anesthesia in a couple of months.  If he decides the time is right, he may take that time to tighten the muscle in one or both eyes so they are straightened.  However, he told me that she may have to patch until she’s ten.  TEN YEARS of age.  This little smiley baby hates the patch and shuts down when she has to wear it, but I have to really get better at patching her eye so she’ll be able to see out of both eyes.

It’s so hard to remember to DO all the things that she needs…and that the other kids need.  We’re doing slightly more than surviving, but do I brush my toddler’s teeth twice a day?  No.  (Although he went to the dentist today for the first time and had no cavities!)  I’ve never brushed the girls’ teeth.  Oops.  I’m lucky if the kids get two baths a week.  If we eat a home-cooked dinner, it’s a huge accomplishment.  Our house is a mess…always.  At some point, maybe it’ll get easier?  Maybe I’ll get better at taking care of myself, our house, and our kids.  I’m always behind on everything.  I’ve actually thought about making myself a sort of “chore chart” that I can check off everything that needs to be done and try to get it all done each day.  It makes me sad to think about the fact that I NEED this.  How can it be so difficult to remember to give a baby medicine every night (although we usually get that one)?  Answer: very difficult when you have other kids to think about.   But I’m working on it.  Realizing there’s a problem is half the battle, right?

We’re Still Here!

It’s been a while since I’ve written, but the days melt together, and then you realize that a month has passed.

I got out of the house today, dressed in my business casual, to drive an hour for a pro bono case I am working on.  It wasn’t anything special, just an observation, but I felt a little more like me again.  I think showering, wearing makeup, and just leaving the house alone makes a huge difference.  I miss my kids when I’m gone, but I really do think it’s time to try to do some work, even just part time.  I need that part of me.  It might make me a bad mom, and yes, I know that they’re only little once — but I’m happier when I can get away for a little bit.  I can be a better, more appreciative mom when I’m doing something else with my brain.  Now to just figure out how that will work out.

Babies have had croup.  They are feeling better, I think.  Baby B was super-needy this week, but she’s now allowing us to set her down.  Baby A is all over the place, bouncing and crawling as much as she can.  They are both gorgeous.

Big brother is now 4; I meant to write a post for his birthday, but I forgot.  He’s so sweet.  He held Baby B’s arm in her seat when she was crying in the car.  I can’t believe how big he is.  He’s so smart and helpful, too.  I look at him every day and remind myself how lucky I am.  I’m so lucky to have all of my sweet little ones.  Guess I should get to bed and get to snuggling!

Big Brother’s Birthday

Today we celebrate the birth of the babies’ sweet brother, who is FOUR.  How can that be?  He was just born, right?

I looked back at photos from the day he was born, and I don’t miss that day.  I miss every day.  I miss the passage of time.

I know it’s not PC to say, but I didn’t fall madly in love with him the day he was born.  I loved him, but every day since I’ve grown to love him more and more.  It’s like my love bucket for him and my girls is always full, but each day the bucket grows.  I don’t know if every mom feels that way, but this is how I feel.  I’m constantly surprised by how much I love him and how much that love grows every day.  It’s the same way with the babies.  Babies are hard.  You love them, but also, they make life pretty rough.  But every day, each smile, each “mom mom mom,” makes that love grow.

My little man is so kind, caring, compassionate, intelligent, creative, hilarious, and everything good.  I am so lucky to have him as my boy.  As much as it is painful to see that he’s growing up and will eventually move on from this beautiful age and probably not want to snuggle or read books with me, I look forward to seeing what kind of awesome kid he grows into.  Happy birthday, big brother!

Let’s Talk About It

Tonight, after a rough day with three kids, my husband said, “Hey, do you remember I told you that [a coworker’s wife’s] coworker and his wife were going through TTTS?”  Um, no.  I hadn’t heard about it.  I guess the coworker’s wife offered to give them our information, but I assume they didn’t take it.

These people, who live in our county, presumably, were diagnosed with TTTS just over a month ago and were told that surgery wasn’t an option.  So they did nothing.  And she delivered the babies within the last week, allegedly at full-term.  One of the babies died as a result of TTTS.  The other baby and the mom both had major complications and almost died.

Upon hearing this, I burst into tears.  Why?  Because maybe I could have helped them.  Maybe I could have helped them find the right doctor who would have done something differently and saved that precious baby.  I don’t know WHY they were told that surgery isn’t an option.  I know that when I had the laser surgery, we were a few days past the typical cut off, which is 26 weeks.  Now, at 26 weeks, the babies are technically viable and could be delivered if that’s the only option.  With my babies, the damage was so severe that one or both may have died if they were delivered then.  I had one of the most skilled TTTS laser surgeons in the world perform the surgery, and we are fortunate that it worked.  So if this mom was past the point where surgery was an option, the babies should have been viable.  There’s a point where the best option is delivery.  Who was her obstetrician or MFM?  They should have been monitoring her like crazy so that the babies could be delivered at the first sign of any trouble.  Maybe they were.  TTTS can progress so quickly.  I just hope they were as informed as possible.

I know shit happens.  I know you can’t control everything.  I know that it’s tough to be your own best advocate and tell your doctor what you really need.  But now I know of a network of parents whose lives were forever changed by TTTS.  These parents, including me, will do anything to prevent another family from the heartache that we’ve experienced.  They are a wonderful resource for those who are experiencing TTTS in their pregnancies and parents who are living with the outcomes — positive, negative, and everything in between.

This family’s loss shook me.  I know how fragile the situation can be, but just last night, I posted on Facebook a photo memory from this time last year — when my belly really popped, which was one of the first signs of TTTS that I experienced.  I asked my friends to share my story and to give my information to anyone they know who is having twins, especially monochorionic diamnionic twins.  I want to help.  I know that even with all the issues that our Baby B has, we are the lucky ones; she’s here in our arms.  We don’t know what her life will be like, but she has one.  So many have lost one or both of their TTTS babies.  I want to support the TTTS Grief Support Team as much as possible.  I want to be a resource for other moms.  I need to spread the word about TTTS because of how much it has rocked my world.  One of my missions in life (other than raising healthy, upstanding children) is to spread awareness and do whatever I can to prevent this disease from ravaging other families.

Please, share our story.  You never know who you might help.  If a friend seems reluctant, give me their information, and I’ll contact them.  I don’t care about being pushy if it might save a life.  Hug your babies tight; there is nothing more precious.

To read about the rest of our TTTS journey, click here.

The Sweetest Sound

Hearing your baby girl laugh is always amazing.  Hearing your baby girl laugh when you weren’t sure IF she would ever laugh is even better.  Little Baby B loves raspberries on her tummy.  I mean, she LOVES them.  Nothing makes her laugh like those.  Baby A laughs, too, of course.  She’ll laugh when you make silly noises on her tummy or tickle her.  They both love to look at each other and smile.

So — yay!  Little B is progressing!  She’s growing, slowly.  Her kidney function is about the same, and the nephrologist thinks that we won’t have to worry about a kidney transplant until she’s older.  She’s doing well with therapy.  She sat up with her physical therapist for about 2 minutes yesterday, and her occupational therapist worked with her today and said that she is pleased with how her tone is decreasing (the cerebral palsy makes her muscle tone very tight).

But she also cried most of the way to therapy and most of the way back.  I’m always wondering what the next thing will be.  What’s the next obstacle?  What’s the next issue?  She’s doing really well right now, but she’s having trouble eating solid food.  A swallow study is coming up soon, just to make sure she’s not aspirating food.  I don’t think she is, but swallowing is still tough for her.  So while I watch her sister grabbing toys, rolling around, starting to move and bounce and sit — I watch and wait for Baby B to make those same moves.  I don’t know if she’ll ever move as freely and easily as Baby A.  The effortlessness of a baby’s grasp is only effortless if the baby’s fists aren’t tightly clenched most of the time.  For her, everything requires effort.  She has to be stretched so she can use her hands.  The calculation required for her to get her tiny thumb in her mouth is so evident; it’s cute and almost comical, but if I think too hard about it, I get sad.

The tangle of emotions is constant.  I’m so happy to hear her laugh and watch her finally get her thumb in her mouth, but what simple task will she struggle with next?  She doesn’t really roll.  Who knows when she will be able to do that, or crawl, really sit on her own, stand, walk, talk?  While Baby A says “Ma-ma-ma-ma-ma” and “Da-da-da-da-da,” and we get some great coos and “goooo”s from Baby B — when will she call for me?  How hard will she have to work to make those sounds that come so naturally to other babies?  She’s beautiful and sweet and snuggly, but I feel like with her, I’m always waiting for the next thing that will be a struggle.  I celebrate the little victories like the belly laughs, but then I immediately cross that off the list and look out for the next challenge.

It’s a struggle for me to live in the moment.  I just want to be excited and not be filled with worry.  I need a good meditation to help focus on the good things that are happening.  I have two beautiful baby girls and a handsome little boy who deserve a mommy who lives in the present and doesn’t waste time worrying about the future.

So, I need to remind myself that every day is a victory.  She has amazed us.  When she was born, we didn’t know if she would ever be able to do anything, and she can and does do all kinds of things, and she will do even more.  Wondering what’s next isn’t productive.  It makes me sad, and a sad mommy is a shitty mommy.  I love all of my kids.  I want to enjoy each of them and all of their accomplishments without that anxious voice reminding me that the future is uncertain.  The future is always uncertain.  It’s time to just move past that and BE.  My kids are and will be amazing.