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.

New Therapy

Baby B already goes to physical, occupational, and speech therapy multiple times a week, but the pediatric dentist who performed her lip and tongue tie severing procedures recommended craniosacral therapy.

What the hell is that?  I have no clue.  If you google it, you’ll see craniosacral therapy defined as:

  1. a system of alternative medicine intended to relieve pain and tension by gentle manipulations of the skull regarded as harmonizing with a natural rhythm in the central nervous system.

With the recommendations of the owner/speech therapist at the therapy place, we set up craniosacral therapy for Baby B.  I couldn’t tell you what happened.  It looked, to me, like the therapist put his hands on the baby’s chest and back and she squirmed around.

During the therapy, he asked what the birth process was like, and I told him that she was a c-section.  The speech therapist explained that she spent some time in the NICU, and he asked if it was for breathing.  I said, “yes, initially; but she stayed to get the MRI of her brain and monitor her kidney function.”  He asked if she was ok now, except for her head size, and I said no, because she still has kidney problems and might need a kidney transplant.

After about twenty minutes, he said that it seemed like her body was done, but he still hung on to her feet until she calmed down.  The therapist said that the body has its own intelligence and knows what it needs to do.  He said that her body needed to go through the birthing process, and he asked if I noticed that she seemed to be moving around like she was going through the birth canal.  I think I held back my super-skeptical face, but he probably could read the skepticism anyway.  “I know it sounds like hokum,” he said, “but it works.”

When he left, I kept shaking my head.  It didn’t even look like he was doing anything, but he tells me that her body needed to go through the birthing process?  It was just too weird.

But — in the last week, I have noticed a change.  The other therapists have noticed.  Her arms and hands are looser.  Her back is straighter and shoulders are back more.  Her legs and hips are more limber and looser.  He could burn incense and chant incantations for all I care — if it helps her move more and feel better, I’ll do it.  I can’t wait to see what the next sessions will do for her!

The Eyes Have It

Last week, we revisited the place where our babies’ lives were saved, at Jackson Memorial Hospital.  Specifically, we went to the Bascom Palmer Eye Institute with Baby B to see what we could do about her crossed eyes (strabismus).  The local ophthalmologist saw her, heard a bit of her history, and said that he probably was not the right doctor for her, because he didn’t really work with children who have neurological problems.  We appreciated his candor, but it felt like a wasted appointment.  However, he referred us to Bascom Palmer, and we realized that it was the best decision for our little one.  The ophthalmologist (and his team) were very thorough, and the appointment took about five hours.  At the end, we were told to patch our little one’s good eye for half of her waking hours.  We could be doing this until she’s ten YEARS old.  She also may need surgery, but the good news was that each of her eyes independently seems to have pretty good vision, so she doesn’t need glasses yet.

I had a lot of feelings as we went to Miami and drove onto the campus of the hospital, which is also the campus of the University of Miami medical school.  Somehow I missed that fact back in September, so now it makes more sense that there were 30 people in the operating room when I had the TTTS laser surgery — they were medical students!  I was brought back to September, to walking into the emergency room, asking where the Fetal Therapy Institute was, being told to walk that way, take the elevator, go down the halls, etc.  I remembered sitting at the fountain with the kind nurse who brought me preemie diapers to put in my bra (they had no nursing pads, but the surgery made my milk come in quickly), talking about her kids and watching a little boy play in the area.  I thought about the hours-old tuna sub that I didn’t really eat the night before surgery while I had the long ultrasound.  Although I didn’t really walk around the hospital in September, just being so near to where I experienced some of the hardest times of my life brought back a flood of emotions.

I looked at sweet Baby B, with her bright eyes and long eyelashes, her tight muscles and crossed-eyes, and I was so damn grateful that I had these memories of Jackson Memorial.  Without that surgery, I believe she would have died immediately, and Baby A may not have lived either.  The TTTS had progressed too far for their 26 week bodies to handle.  I am so thankful for the world-class surgeon who performed the surgery, particularly as he has since stopped practicing and stepped down from his position at the Fetal Therapy Institute.  He performed the surgery just in the nick of time (based on Baby B’s current health, I feel comfortable saying that even waiting a few more hours would probably have been fatal).  The babies were not born in September.  They did not have to spend months in the NICU in Miami.  We did not have to bury either of our girls.

Even though Baby B has a lot of issues stacked against her, she is still happy (unless she’s not being held — then she’s mad), beautiful, and lights up so many peoples’ lives.  The people at therapy love her.  Even the therapists who don’t work with her will seek her out to say hello and remark on how much she smiles.  She’s moving her arms and opening her hands more.  She’s getting on track to sit.  She’s a snuggle bug and can only sleep when she’s snuggling with someone.  She loves people.  She loves her family.  She laughs when you nuzzle her belly.  She’s just our little sweetheart.

Baby A is almost sitting on her own.  She’s trying out food and making all kinds of different sounds.  She likes toys and raspberries blown on her belly.  She grabs her toes a lot and tries to take off her socks.  She’s very calm and loves to sleep, but sometimes her sister wakes her up.  She can roll over, but sometimes she forgets and gets stuck — and then she really complains!  She kicks and grabs and is also our little sweetheart.  Both babies are just perfect.

After a picnic with other moms of multiples and seeing some of the babies, I felt a little sad about how Baby B doesn’t look like Baby A, even though they’re supposed to look alike.  My husband said the best thing he could have, “Baby B isn’t supposed to look like Baby A; she’s only supposed to look like Baby B.”  (It sounded better when he said their names, but I’m not ready for them to be out there yet.)   Even though they don’t look totally alike, they have the same little noses and perfect baby lips.  Their eyes are the same deep blue/gray, and they both have long eyelashes.  They like to lay next to each other with their hands and arms entwined.  I think that Baby A is going to make sure her sister reaches her full potential (the rest of us will help, too, of course).

Catch Up

So far, Baby A seems to be a perfectly fine, happy, curvy (not fat) baby.  She’s very low-maintenance and happy.  She laughs and furiously sucks on her fingers.

Baby B is also happy and sweet.  She loves to cuddle (demands it, really).  However, she has a lot going on with her health:

Our main concern right now is her kidneys.  They were affected by the lack of blood flow so that they are not functioning normally.  The nephrologist keeps a close eye on her labs and ultrasound images to monitor the kidney function.  Poor little Baby B has to have blood taken at least once a month (normally more), along with urinalyses and ultrasounds every couple of months.  The doctor told us that there is a greater than 50% chance that she will need a kidney transplant, but he is hoping we can hold it off as long as possible.  Her nephrologist also diagnosed a heart murmur in early January.  Thankfully, the cardiologist said it appeared to be normal and was closing on its own.

Our pediatrician thought we should wait to see a neurologist, but Baby B’s limbs seemed to be getting tighter.  We got a referral from the nephrologist for a neurologist, who she saw in April, who officially diagnosed her with cerebral palsy.  It’s not the typical cerebral palsy; it’s caused by “something something brain something due to twin-to-twin transfusion.”  The injuries occurred to her occipital and parietal lobes, mostly on the left side; these were due to the lack of blood flow caused by TTTS.  Basically, what happened to her kidneys happened to her brain.  The doctor was impressed by everything she could do, and he said that he’s often pleasantly surprised by what babies who are born with brain injuries are able to do.   He prescribed physical, occupational, and speech therapies to help her loosen up and make sure she has as everything she needs to succeed.

The therapies have been amazing!  She goes twice a week for three different therapies, and she’s been making great progress.  Now, she can suck on her hands, lift her hands above her head, and kick more.  She’s also becoming better at tummy time.

Our little B’s head circumference has grown a little bit.  We don’t know how much more it will grow, though.

She also is going to have a consultation with a pediatric ophthalmologist because her left eye looks really crossed, and it’s getting worse.

The speech therapist noticed a lip tie (where the connective tissue connecting the upper lip and gums goes all the way down the gum line).  This could be why she has trouble eating sometimes, because she just mashes down on the nipple, since she can’t properly suck.  We are going to call a pediatric dentist to see if he can take care of it quickly and easily.

We’re hanging in there.  As the girls get more and more into a routine, life gets a little bit easier.  Our little toddler son has adjusted gradually to sharing attention with the babies, and he can be very sweet to them.  We try to make special time with him to play monster trucks or go to the park .

That should catch us up to where we are today so I can start trying to keep the posts more in the present.

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

Go Babies, It’s your Birthday

Once I knew that it was the babies’ birthday, I started to get excited.  Finally, I would be able to move around again!  Finally, I’d have my babies in my arms.  Finally, I’d be able to snuggle with my son again!  The babies seemed to be moving around pretty well, and our only worry besides the possible kidney issue was whether we’d be able to tell them apart.

I texted Dr. OB to tell him that the babies were coming and ask if he could call the on-call OB and fill her in on all the craziness of my pregnancy.  He said he would and wished us luck.  We signed the paperwork for c-section and tubal ligation (no more kids for us!), met with the doctor and the neonatologist who would be taking care of the babies, and I was prepped for surgery!

Since I had a prior c-section, I knew what to expect, but it was still scary to have the spinal block and wait for my babies to be taken out of my belly.  Baby A was born at 3:02 p.m., weighing 5 pounds, 3 ounces; Baby B at 3:03 p.m., weighing 5 pounds, 2 ounces.  At first, we heard two loud cries, and we were pretty excited.  However, Baby B was having trouble breathing, and we were told that she would need to be moved to the NICU to be put on a breathing machine (CPAP) as soon as possible.  The neonatologist also mentioned that she has microcephaly.  We had no idea what that meant.  Baby A seemed to be fine.  She was taken to the baby nursery to be weighed, measured, and bathed.  I sent my husband with Baby A and listened to the doctor and her assistant (there were very few people left in the operating room once the babies left) discuss black Friday shopping and my pretty pink Kate Spade bag.

I lay there listening to their conversation and wondered if the babies were ok.  I could figure out that microcephaly meant “small head,” but I didn’t know anything else about it.  We were never told before she was born, during any of the ultrasounds (which were at least once a week, sometimes up to three times a week) that there was any concern about Baby B’s head size.

In recovery, a nurse asked if they could give Baby A some formula, because her blood sugar was low.  They wanted to ask, because I said I wanted to breastfeed.  I said, “Of course.  If she needs it, please don’t hesitate to give her formula.”  My husband rejoined me and the neonatologist came in to discuss the babies with us.  He said that Baby A seemed to be OK, but she barely squeaked by the requirements for the regular baby nursery.  Baby B was on a CPAP machine.  He said that she has microcephaly and brain damage caused by the TTTS.  Wait, what?  We were only told about a possible kidney problem!  The neonatologist said that they would do an ultrasound of her brain as well as her kidneys, and he would request an MRI of her brain as well to determine the extent of the damage.  I don’t think it really sank in at that point, because we hadn’t really seen her.  My husband said that after they pulled her out of me, she was gasping for breath and turned blue.  It was scary, but he knew that was why the doctors were there.  I didn’t even get a picture with her.  They had brought her by me and swept her away in the incubator.  In the rush of hormones and craziness, I just tried to focus on the babies being here, and I thought they would probably be OK.  I shot off a few casual text messages to some friends, coworkers, bosses, and Dr. OB, saying that the babies were born, but Baby B had some health issues and brain damage.  Dr. OB assured us that we were in good hands with the neonatologist.  Everyone said they would be praying for us.  I just posted on Facebook that Baby B had some health issues and would need to spend some time in the NICU.  I didn’t know how to explain something that I didn’t understand, and I didn’t want to answer the inevitable questions or field the barrage of condolences I was sure would come.  I just wanted to be happy and enjoy this day.

My parents came to the hospital and brought my sweet son.  He got to meet his sister, Baby A, and he stayed with Papa while my mom, husband, and I (in a wheelchair) went to the NICU to meet Baby B.

Little Baby B was hooked up to the CPAP machine, which was forcing air into her lungs.  She was only on room air, not oxygen, which was great.  It was still so scary to see her hooked up there, with her little head and tubes attached to her body.  I cried, touched her, and said, “Mommy’s here, honey.  I love you.”  I needed to get back to the room, as I had just undergone major surgery, but I still couldn’t really process what was happening.

That night, I sent my husband home to get a good night’s sleep and get all the things we needed to mail my placenta to the hospital that performed the TTTS surgery (yes, it’s weird, but it’s part of the agreement when you have the surgery).  I kept Baby A in the nursery so I could get some sleep, and I exchanged text messages with a few friends.  Again, I wasn’t able to be super-excited about the birth of my babies.  I wondered what life would be like.  What was the extent of her brain damage?  Would she be able to breathe on her own?  Would she be able to eat on her own?  Move?  Talk?  What would we do?  How would this even work?  Was I being punished for being a bitch about how much better my son was compared to other people’s kids?  Would I be able to go back to work?  Would she be functional?  Would her sister feel guilty?  Would she resent her sister, even though they clearly had no choice in the matter?  Worse, would she not have the capacity to resent her sister?  I couldn’t imagine.  I have always been proud of my intelligence, and one of the things my husband and I love so much about each other are our big brains.  Would we be able to handle this?  I had so many questions and worries, but no answers.  I did sleep that night, on and off, alone for the first and last time in a while.

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

Smoother Sailing

So after the surgery and the growth restriction scares, we finally went to appointments with Dr. MFM where everything was looking OK.  In the meantime, I was diagnosed with Cholestasis of Pregnancy, a gallbladder disorder that can come up during pregnancy and causes major itchiness, among other potential complications.  Fortunately, the medication I took for it worked pretty well, so I wasn’t scratching my skin off day and night.

I also canceled my baby shower, because I didn’t want to have a shower at my house when I was on bed rest and when we weren’t even sure if two babies were going to survive.  It was a sad decision, and it was hard not to celebrate the pregnancy like a normal person would.  I missed seeing my friends and opening all the cute outfits, saying, “oh, they’ll be so adorable in this!”  Instead, I was laying on my side, counting kicks, drinking water, watching all the t.v. I could stand, leaving the house only for doctors’ appointments, and counting down the days until December 2, when my c-section was scheduled.

I cried a lot.  I just kept waiting for more bad news.  We thought the babies would be ok, but there was still a concern about Baby B’s kidneys.  After what we went through, I just couldn’t allow myself to feel that positive about the outcome of the pregnancy.  I tried, but it was like I had post-traumatic stress disorder from TTTS and the surgery.  I questioned every move, replaying every doctors’ appointment and visit to the hospital and wondering why no medical professional could figure out that I had the signs of TTTS before the actual diagnosis.  I did everything right.  I went to the doctor when I was concerned.  I went to Labor and Delivery when I was concerned.  I went back when I still didn’t feel right.  Why the hell did it take so long?  Why did Dr. MFM not have me in for a follow-up ultrasound earlier?  With nothing but time, I did a lot of thinking, wondering, and questioning every move.

My poor son took some time to adapt to having mommy in bed all the time.  He knew that I needed to keep the baby sisters safe, but it was still hard for him.  Up until the time I got pregnant, he was the center of my universe.  It was an adjustment for all of us when that dynamic changed.

My wonderful husband had to do everything.  He took care of our son, his sons, me, and every household chore, in addition to going to work every day.  I know it wasn’t easy for him, but he very rarely showed how worn out he was or how stressed out he was, too.

I had to watch my little man go off for trick or treating without me.  I played Farmville on my phone constantly.  I cleared out the DVR.  I just maintained and grew babies…a human incubator.  The first time I felt like a normal person again was when I tried Jamberry nail wraps.  I just felt pretty.  It had been so long since I dressed up or did anything for myself.  I kind of threw myself into it to have something to do and something else to focus on besides the ticking clock.  I know it sounds strange, but it came at a time when I needed a little lift and a way to connect with people again.

It was November, and I knew that the babies might come at any time, and yet, they stayed put.  32 weeks passed, then 33, and 34.  I was surpassing everyone’s expectations of when the babies would come, and I was so grateful.  I started to think that maybe everything WOULD actually be ok.

My last appointment with Dr. MFM was the Wednesday before Thanksgiving.  The new ultrasound technician, who I didn’t like, did the ultrasound, and Dr. MFM came in briefly to mention the kidneys and tell us to come back on Monday if I didn’t have the babies before then.  I was really upset for some reason.  I just couldn’t place it, but there seemed to be huge differences in the ventricle size in the brains of Baby A and Baby B.  He said not to worry, it was probably nothing.  I still questioned why there would be a difference like this, and he said, “why are you still crying?  If I’m not worried, you shouldn’t be worried.”  How arrogant.  I guess I couldn’t argue with that, but I still felt funny about everything.  I just wanted to meet the babies and know that they were finally OK.

My dad, the chef, agreed to cook dinner at our house for Thanksgiving, since I couldn’t go anywhere.  My uncle, aunt, cousins, grandparents, parents, and nephew came over for dinner.  It was nice to have everyone over and really get excited about the babies being born, hopefully that following week.

My friend A came over the next day with her husband and their little boy.  It was great to see them, but it was even better to know that the next time I saw them, we’d have two little girls!

I kept joking that I’d definitely have the babies that weekend after Thanksgiving, because Dr. OB was going to Ohio then.  So I wasn’t entirely surprised, though I was disappointed, when I woke up Saturday morning and thought I might be leaking amniotic fluid.  I called the on-call doctor, and she told me to go ahead and come in to Labor and Delivery at the hospital as soon as possible (I was supposed to come in around 10:30 anyway for a non-stress test) so they could test me and see if my water broke.  If so, I’d be having my c-section that day.  She hung up and called me right back to tell me not to eat or drink anything so there wouldn’t be a huge wait to perform the c-section if I needed one.  I called my parents and asked if they could come up and meet with my husband to get the kids so he could be with me, just in case the babies were ready to come.

I got ready to go, and my husband dropped me off while he went to the park to wait for my parents.  He quickly joined me at the hospital, where I was hooked up to the monitors and watching the babies move around in my belly.  The nurse did the test and confirmed that I was leaking amniotic fluid, so we’d be having the babies that day, November 29.

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