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!

The First Little Boy I Loved

My nephew was born the day before my high school graduation.  I was not quite eighteen and not excited about having a nephew.  My sister was nineteen, and I was getting ready to head off to college, so I obviously had the world figured out (in my mind).  My sister’s pregnancy was a real drag on my senior year — her baby shower was the same night as my prom.  My mom constantly told me that if she went into labor during any of my important events (band awards, concerts, graduation), she would not be there.  I was so resentful.

But then…then I held that little baby boy with the cone-shaped head (from being stuck before the doctor decided a c-section was best), and I was in love.  I would come home from work at Chick-fil-A, grab him from his crib, hold him, and cry about how much I would miss him.  My dorm room walls were plastered with baby pictures.  I wanted to move home and attend the local community college because I missed him so much.

Once, when I came home for the weekend, I was so excited to see that sweet baby boy and hold him.  I immediately scooped him up when I came through the door, and he burst into tears, crying and reaching out for my mom.  I was devastated.  Although I didn’t leave the college I was attending, I came home at every opportunity and spent as much time as possible with him.

This sweet boy got a sister when he was about 2.5 years old, and I moved home the following year.  I loved bringing them to the movies, playing with them, picking them up from school, and just doing anything with them.  Even when I went back to school to get my Juris Doctorate, I came home at least one weekend every month and had them come to visit me during spring break.

Years passed, and this boy turned into a teenager.  He wasn’t as excited about hanging out or hugging, but he was still that sweet boy deep down.  He’s had a rough time the past few years, but who didn’t have a lot of drama in their lives as teenagers?   He likes to play video games…as much as possible.  While he isn’t big on social interaction with his family right now, it makes me so happy when he plays with my toddler or helps out with the babies.  I see him smile at them, and I can see that sweet little dimple-cheeked boy who stole my heart so many years ago.

Well, 18 years to the day that I graduated, I was privileged to watch this little boy, this man…an actual 18-year old adult, walk across the same stage at the same high school and graduate!  We weren’t sure he’d make it through, but he pulled it off!  I am so proud of him and the wonderful adult that he is going to be.  I know that he will do great things once he realizes that he can.

Based on how I feel now, I can’t even imagine how I’ll feel when my toddler and babies graduate.  It’s times like these when I really remind myself to cherish the moments (and take lots of pictures).

Twin Mom, First Official Days

In the morning, I got my beautiful Baby A, fed her and held her.  It felt like it did when I had my toddler, except that this was all wrong.  My sweet Baby B was in the NICU with an I.V. and breathing machine.  The girls were separated for the first time in their whole existence, and it just didn’t feel right.  I still didn’t really know what to expect for her, and I took little comfort in the fact that Baby A seemed to be so perfect.  It just made me even more sad.

I was finally moved to a room on the Mother/Baby Unit (for some reason, they didn’t move me there the night before, so I remained on the Labor and Delivery Floor) right as my friend K came to visit.  We chatted for a bit before I asked for Baby A to be brought to the nursery so I could go down to see Baby B.  K wheeled me down there, and we both saw my sweet girl, her condition unchanged from the night before.  I still wasn’t able to hold her.  It was so surreal that I had this sweet baby who I hadn’t even been able to hold yet.

The neonatologist was going to come by her isolette and discuss B’s ultrasound results with me — her brain and kidney ultrasounds.  My husband was on his way, so K left and he joined me.   The neonatologist told us that her kidneys were enlarged and they would need to keep an eye on her kidney function.  Because of how TTTS works and can affect each baby, Baby A had also had a kidney ultrasound, although hers seemed to be ok.

The bulk of the conversation centered around Baby B’s brain ultrasound, which showed there was an absence of white and grey matter in the frontal lobe of her brain.  I don’t remember the specifics because I was so upset, but he couldn’t tell us what that meant for her life.  I just cried and cried as I patted her little leg from my chair.  I didn’t know if we would even leave the hospital with her.  The neonatologist also said that if she wasn’t able to breathe independently by the next day, he would place her on a ventilator briefly to put surfactant in her lungs so she, hopefully, could start to breathe on her own.

We returned to the Mother/Baby room and Baby A.  Visitors were in and out all day: my parents with our toddler, my nephew, stepsons with their mom and grandma, and some friends.  My husband brought people down to the NICU to visit Baby B and was even able to briefly hold her, even though she was still hooked up to the machines.  I started having a lot of back and incision pain and did not make it down to see her again that day.  I know that she had other tests done that day, but I don’t really remember what they were.

The next morning, I waited for Dr. OB to come in and check on me before I went to see Baby B, because I didn’t want to miss seeing him and thought he would be in around 9.  He came in around noon, looking much more somber than usual.  He had been in the NICU for at least an hour and discussed Baby B with the neonatogist.  He said that with microcephaly, we wouldn’t know what she would or would not be able to do or what her life expectancy would be.  No one had mentioned life expectancy yet, and I immediately burst into tears.  Dr. OB also said that he looked back at my records to see if they missed something, and he even spoke with Dr. MFM to have him do the same.  He said that he didn’t see where anything was missed, but he only had Dr. MFM’s reports on which to base his information.  Dr. OB said that this diagnosis was not one with which we should have been blindsided.  He said that Dr. MFM was supposed to call and discuss this with me, too.  I told him that Dr. MFM wouldn’t call me; I was sure of that.  (He still hasn’t, almost 6 months later.)  Although the nurse who cared for me the night before said that I probably would go home that day, Dr. OB said that I could stay another day if I felt like I should.  Had Baby B not been in the NICU, I might have agreed to go home that day, but I didn’t want to leave.  I wanted to be as close to her as possible while I could, and I was still having pretty terrible lower back pain.

The photographer came to ask if we wanted Baby A to be photographed.  I refused, because it didn’t seem right to have a professional picture taken of her without her sister.  Baby A had her hearing test and some additional blood work done to check on her kidneys, too.  She almost did not pass the tests and needed multiple blood draws to keep an eye on her Potassium levels.

I saw Baby B that afternoon, which is where I learned that Dr. OB had been down in the NICU for so long that morning.  The plan was for her to have the surfactant placed in her lungs that afternoon and hold back her feedings to make sure she was able to keep food down.

Baby A, my husband, and I spent the last night in the hospital and waited to be discharged.  I finally was able to hold Baby B that morning!  It was amazing!  She was off the machines, and I could immediately see how tiny her head was, especially compared to Baby A’s.  She seemed pretty attentive and was so cute.  I cheered up a bit, seeing that she WAS able to breathe.  She was also starting to take bottles, which made me relieved that she seemed to be able to eat on her own, too.  We were fortunate that the NICU allowed us to bring Baby A in to be with Baby B before Baby A and I left the hospital.  We took lots of pictures, and the girls seemed to fall right back into being each other’s partners.  Baby B, with her I.V. taped to her arm, reached over to touch Baby A and look at her.  It was amazing to see them reunited and heart-wrenching to have to leave her and go home with just one baby.  There really is no feeling more bittersweet than bringing home one healthy baby but leaving another baby behind in the NICU.

Stupidly, I googled “microcephaly” that night in the bathroom.  I had a very long panic attack, complete with hysterical crying.  My husband came in to try to calm me down and remind me to stay off the internet.  I just wanted to see if there was any information about life expectancy, because Dr. OB was the only one who ever mentioned it.  It seemed that the neonatologist probably did not say anything because there are so many unknowns, but a shortened life expectancy is likely with microcephaly.  The fact that I can write this now shows you that I am on some good antidepressants, but also that I believe in my baby girl.   She is amazing, and I know she will surpass any and all expectations.

My husband and I celebrated our 4th wedding anniversary by visiting her while my parents watched Baby A and the toddler, then picking up Olive Garden to eat at home.  I was in so much pain and had such a hard time going to the hospital every day, but I felt bad that we were only going to see her one time a day.  I felt like a fraudulent mother, abandoning my sick baby to be with her healthier twin.  Baby B remained in the NICU until that Saturday, although we thought she was going to be able to go home on Friday after her MRI.  Her Creatinine levels were high, and the pediatric nephrologist at APHC wanted to monitor her blood to ensure that there was a downward trend.  We made an appointment to bring Baby B to Orlando to see the nephrologist the following Friday so he could follow up with her.

By the time Baby B was able to come home, she was able to nurse well, she was pooping like a champ, and she was still cute and as calm as could be.  She liked to snuggle, and the nurses in the NICU had taken to holding her quite often because she was so sweet and no longer hooked up to a bunch of machines.  Right before leaving, we met withe the neonatologist to go over the MRI.  She said the MRI confirmed that there was a loss of white and grey matter, but again, she refused to speculate about what Baby B’s future would be.  We were just happy to be bringing her home, so we gathered the tiny hats and blanket made by volunteers, said our goodbyes to the kindest, most giving nurses in the NICU, and strapped our tiny baby into her carseat to head home.  Finally, our sweet Baby B was reunited with her sister and officially met her brothers.  Our life finally felt complete.

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

Present Day — Mother’s Day

I wanted to jump back to the present for a post before I go back and finish writing about how we got here.

Today (well, yesterday) was Mother’s Day.  I think about how much I’ve changed since becoming a mother.  I know people say that being a mother changes you, but it’s insane to look back and see how much.  Who am I?  I’m the mom of L, A, and R, above all else.  If you told me seven years ago, when I graduated from law school, that I would be a stay at home mom to a toddler and twins, one of whom has special needs, I wouldn’t have believed you.  My intelligence and career choice have always been what made me ME, and I was proud of that.  I looked down on moms who left their careers to stay home with babies (I should go back in time and slap myself).  Anyone could watch a baby.  Not everyone could write winning motions and appeals.

Then, I had L.  I got it.  What a bitch I was to judge before I knew how much of your whole self, not just your heart, is consumed by a child.  I finally understood how heart-wrenching and painful it was to leave your child with someone while you drove away to spend the day at a computer or in a deposition.  Nothing was as important as L.  I pushed through each workday thinking of him, missing him, worrying about him, and wondering what he was doing.  Being a lawyer wasn’t that important anymore, but we just couldn’t afford for me not to work.  I gradually accepted that I wouldn’t be there for his every move (or the first time he walked), but as I like to say (and as he’s started to say, too), “it is what it is.”  He was still happy and adorable, and I spent every possible minute with him when I wasn’t at work.

When I was pregnant with the girls and going through so many complications, we looked into whether I would need to go back to work.  We might be able to make it work if we had to, but we were waiting day by day to see if we would have micro-preemies, preemies, babies with health problems, or even perfectly healthy babies.  We had no idea what to expect until the very day the girls were born.  Until then, we were in the market for a new babysitter or daycare, because we weren’t confident that L’s babysitter could handle 3 babies when I returned to work.

The day the babies were born, and we were told that R had brain damage and microcephaly, we knew that I would need to be home with her, with all of them.  It was so hard to say goodbye to my coworkers, my boss, and the office where I worked for five years, but I knew it was the right thing to do.  We had no idea what R’s life would look like, what her abilities and limitations would be, and we couldn’t possibly trust a stranger with her or our other kids.

It was the right decision.  I know that.  But that doesn’t mean I don’t have some regrets…well, not regrets  in the typical sense, but frustration that I can’t have it all.  No mom really can.  Lean in all you want, but the more you lean in professionally, the more you lean out of your house and away from your kids.  I miss my coworkers and some of my clients, I miss the routine of getting up, showering, and even the hour-long commute to work.  But, I get to play monster trucks.  I get to make mini pizzas for lunch.  Sometimes I get to go to the park.  I get to pick out the matching outfits and blow raspberries on chubby bellies.  I get to snuggle.  I’m who they look to for comfort, to meet their basic needs, and I know they know that I’m mom.  I’m the one who’s there for them.  There’s no babysitter who mistakenly gets called “mom” because she’s there during the waking hours more than I am.

Recently, two local jobs that aren’t typical “legal” jobs have opened up.  They sound perfect for me, but not THIS me, the former me.  The me who didn’t have to go to doctor’s appointments in Orlando and therapy 2-3 times a week in Vero Beach.  I would apply, but I know I’d feel resentful if I were offered a position and had to turn down a job.  I don’t want to feel that on top of every damn emotion in the spectrum, which is what I feel every day.

I constantly wonder if I’m doing enough.  I’m not enforcing drinking from a regular cup enough.  I’m not holding the babies enough.  There’s two of them, and I only have two arms (and a toddler).  I’m not keeping the house clean enough.  I don’t spend enough time with my husband.  I’m not breastfeeding anymore — I couldn’t make enough.  It’s never enough.  I just can’t be enough.  I’m trying hard to be OK with not being enough as I work through this jumble of emotions every single day.  But I love them more than I’ve ever imagined.  I’d lay down my life a million times for any of them.  I may not be enough, but I’m there.  I’m me.  I’m their mom.  That’s enough.