microcephaly

New Therapy

~ riadawson ~ Leave a comment

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

~ riadawson ~ Leave a comment

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

~ riadawson ~ Leave a comment

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

~ riadawson ~ Leave a comment

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.