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!

Top Ten Reasons Why Being a Lawyer is Better than Being a Stay at Home Mom

  1. My boss never screamed at me and kicked me in the chest repeatedly.
  2. Even the worst clients never vomited on me every. single. time. they saw me.
  3. I was never expected to hold out my hand so that my boss could spit unwanted food into it.
  4. Even if my boss berated me, it only lasted for a minute or two.
  5. No judge ever screamed at me for 30 minutes and insisted I stay right there to listen.
  6. I never had to wipe anyone’s ass.
  7. I was able to go to the bathroom by myself.
  8. The sound of quiet is preferable to screams.
  9. I could listen to The KVJ Show on my commute instead of screaming or “Toddler Radio” on Pandora.
  10. After work, I could go home and stop working.

Love Wins

Today the Supreme Court of the United States decided that every person has the right to marry whomever they love.  I’m thrilled that family and friends now can have the right to legally marry their partner, whether they are gay, lesbian, or straight.

It’s nice to know that my kids won’t have to worry about being who they are if they are in love with someone who is of a different race or the same gender.  Just as marrying someone of a different race isn’t a big deal now, I think marrying someone of the same gender will not be a big deal in the very near future.

Let’s all celebrate rainbows and equality — every day.  Life is too short and too hard to have to fight about basic human rights.

Parenting Level – Expert

We returned from vacation today with our five kids and all 28 limbs intact.  1500 miles round-trip — completed.  Whew.

On our trip, we discovered that our toddler gets carsick.  He confirmed it, too.  We were about 5 minutes from our cabin in the mountains when he threw up his dinner all over himself and the back of the van.  We wiped him down quickly and drove straight to the cabin, where I put him in the bathtub and he said, “this is the best vacation ever!”  Oh, to be three and appreciate everything, even after vomiting twice all over yourself.  It’s kind of like being drunk and in college, I guess.  I remember professing my love to a few people after throwing up, too.

We had no WiFi and very little data or cellular service at all on our vacation, and it was kind of nice.  We did a lot of hanging out together, playing games, and of course, taking care of babies.  I think the mountains and lack of WiFi forced me to be very contemplative. I was able to snuggle with the babies and just enjoy it.  They are so beautiful and amazing, and I felt bad for dragging them on the long trip, but in a few years, they’ll be running around (hopefully) and excited about sleeping in their own room.  Our toddler slept downstairs in the room with bunk beds with his brothers.  I was kind of sad.  I hoped that he’d want to stay upstairs in the room across from us, but he assured me he’d be fine.  I made him promise to wake up one of his brothers if he woke up in the middle of the night and needed me or daddy.  He was fine; every single night he was fine.  He’s just a little man.  A few years ago, he was the crying baby who went on vacation and got hot and  bothered being dragged to places outside.  Now, he’s sleeping with the big boys and going potty and getting carsick.

Speaking of carsick, we bought some kids’ Dramamine.  It worked really well…for 6 hours.  We were about 45 minutes from home when I looked in the rearview mirror and saw the toddler looking down, head bobbing a bit, with a sad look on his face.  I asked if he was ok, and he didn’t look up or say anything, so I immediately pulled over.  My husband raced to the back of the van, the younger of his older boys got out, whiled the oldest held a bowl in front of the toddler’s face so my husband could unbuckle him from his carseat.  Just in time.  The toddler threw up in the grass on the side of the road, saving us from hours of cleaning up him and his carseat.  I really feel like I deserve a gold star for that.

Of course, it was Father’s day yesterday, and I must say that my husband is the greatest father I ever imagined in my wildest dreams.  I can’t imagine sharing this parenting journey with anyone else.  He keeps me grounded and makes me happier than I ever thought possible.  I love you, my leopard.  Happy father’s day.  Thank you for giving me the best kids ever!