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).

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).

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.

Adapting

Thankfully, my husband took off the entire month of December, so he was able to stay with us and help navigate our new family situation.  That first month was a blur of breastfeeding, bottles, diapers, and crying…and toddler tantrums and tears, too.

During the first two months, we had to bring Baby B in for blood work multiple times to check her kidney function and Potassium.  She was on medication to help remove Potassium from her system as well as a new formula for babies with low kidney function.  It seemed like the formula made her little tummy hurt, so I tried to keep pumping and nursing as much as possible so she didn’t have to have the formula.  I felt so guilty for deciding to stop nursing and having my supply decrease when it seemed like breast milk was the answer to one of Baby B’s problems.

Baby B’s Potassium was slowly decreasing, but not enough so that she could be off the medication yet.  We also discovered that even experienced nurses and phlebotomists have difficulty taking blood from a 5-7 pound baby.  The day my husband returned to work, I brought the babies to the local hospital to have Baby B’s blood drawn.  Three hours and five needle sticks later, we were all in tears, but they finally got a draw from her foot.  After that, we have gone to the children’s hospital in Orlando for her blood tests, and they have had more success getting her blood, thankfully.

The hardest part about having a toddler and newborn twins wasn’t the lack of sleep, it was the feeling that I was disappointing my son.  Since the day he was born, he has been my number one.  He’s got such a dynamic personality that people are just drawn to him, heaping praise upon him for his little dances, songs, and monster truck commentary.  It was so difficult for him when he was no longer the singular center of my world.  People would visit and fawn over the babies, but he was an afterthought.  It broke my heart every day.  I just wanted to spend time with him again, after all the time on bed rest when I couldn’t do more than snuggle, watch t.v., and read to him. However, the babies needed me, too.  I constantly felt torn between my kids’ needs…he needed attention,  but they needed to have their basic needs met, and that had to come first.

One of the toughest aspects of having twins is that there are TWO of them.  Duh, I know.  But you don’t really understand how hard it is to feed two babies at the same time.  If you feed one after the other, especially when they are newborns, you’ll be feeding them all day.  You can’t hold both and feed them, so there’s some propping to be done.  Tandem breastfeeding was something I never mastered, although there are some super moms who can do it.  They both need to be held and loved; diapers need changed; baths need to be given — all of that times two.  Plus, Baby B seemed to be a little more high maintenance than Baby A.  She cried more (still does) and wanted to be held constantly.

In the meantime, our toddler was watching a lot of monster truck videos and Disney Junior.  He would come into the bedroom when I was nursing one of the babies and start yelling or throwing toys.  I felt like a terrible mom yelling at him and spanking his butt (which I rarely did, but ended up doing multiple times in the first few months after the girls were born), but he would yell and hit me when I was attempting to feed a baby, and there was no reasoning with him.  Before I knew that Baby B really did better on breast milk, I abandoned the idea of nursing, because it just made our lives more difficult.  I wanted to try to pump when I could, but I didn’t want the pressure of trying to feed two babies when it seemed to take such a toll on my son.

At first, it was so difficult to get out of the house.  The babies weren’t really on a schedule, and my toddler was not handling his new normal very well.  Luckily for us, my parents both retired last year.  They came up to help as much as they could, and the kids and I went to their house quite a bit, too.  The toddler went to his old babysitter’s house every once in a while, so he could get one-on-one attention.  Even with some help, there were plenty of days when it was just me with the kids.  I called my husband on more than one occasion, crying, and begged him to come home from work, because I just couldn’t handle the chaos.

I cried every day.  I was failing my toddler.  I was failing my babies.  I didn’t know what Baby B would need and how I could help her.  I was leaving the life I knew as a lawyer and transitioning into a role I never wanted, stay at home mom.  My husband had to go back to work, and I had no idea how I would handle three kids alone.

At my 6-week post-partum OB visit, I knew that I needed to talk to Dr. OB about what was going on in my life.  There were just too many crazy changes, and my life felt upside-down.  I knew that I was depressed, and I did not want to sink into a pit of despair when I was alone with my kids.  The doctor understood and prescribed anti-depressants for me.  He also scheduled a follow-up in a month to see how I was doing on the medication.  I felt relief that finally I might be able to feel happier and enjoy my babies and son.

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

Full House, Full Hearts

Now that Baby B was home, it was like the plates shifted back to their proper position and the ground stopped shaking.  Now we just had to sift through the rubble and figure out how to navigate our new world.  But we were all together, and that was the most important thing for right now.

I still felt horrible.  The next day, I could barely move.  I stayed in bed.  My husband thought I was dying.  I didn’t get up to nurse the babies or change them.  Finally, I felt a wave of sickness and got up to use the bathroom. (SKIP THE REST OF THIS PARAGRAPH IF YOU ARE SQUEAMISH.)  I passed a huge blood clot, the size of my palm.  It was horrible, but I immediately felt better.  I called the doctor to make sure this was normal, and the on-call OB said it was normal, as long as I didn’t have a fever or any additional pain.

With that over, I was able to start being a mom again.  There was a lot of snuggling to do, and also a lot of shopping and Christmas stuff to finish.  Part of the problem with being on bed rest for so long was that, although Amazon helped me shop for some of the bigger things, there was still the completion of the gift-giving process to wrap up (hah).  Plus, I love Christmas.  I love everything about the season.  I wanted to go to the stores and see the decorations and hear the holiday tunes.  I wanted to dress my babies up in matching Christmas outfits and take a ton of pictures.  I wanted to bring my toddler to see Santa.  I just wanted our lives to be normal.

That week, we brought the Babies to the pediatrician, who attempted to assure me that we don’t know what Baby B will be able to do.  He reminded me not to worry about the future, just focus on today.  That’s nearly impossible for an anxiety-driven worrier like me.  But Baby B seemed to be doing well…she was gaining weight and rocking the newborn stuff.  We asked about seeing a neurologist, and the pediatrician recommended waiting until she wasn’t meeting milestones.  Although we thought that was strange, we agreed…after all, she was eating, sleeping, and going to the bathroom, so what else would a neurologist tell us at this point?

Baby B’s first appointment with the nephrologist (kidney doctor) was that Friday, when she was 13 days old.  She needed blood taken that Tuesday prior to the appointment.  I received a text message from the office manager at my job asking when I might be coming back and if I could be available for a phone call with the bosses.  I decided that after the nephrologist appointment, we would stop by the office so I could hand in my notice, return my laptop and key, and pack up my personal things.

My mom stayed with the toddler and Baby A that morning so my husband and I could go to Orlando with Baby B.  Initially, a nurse took the baby’s vitals, then a nurse practitioner checked her out.  When the nephrologist walked into the room for the appointment, he brought an entourage of about 4 other people with him.  He didn’t even touch the baby.  However, he did say that he didn’t think she would need dialysis or a transplant (although his opinion has since changed), so we felt relief that maybe this kidney problem would be temporary.  They wanted more blood work done, so we had her blood drawn at the hospital before we left for lunch.  Before we even finished our food, the nurse practitioner called to tell us the results.  Baby B’s Potassium levels were too high, so she would need to be on medication and have blood work again in 4 days to see if it decreased.

I felt nervous as we headed to my former office.  After all, this was the place where I worked for 5 years.  I clerked in the Tallahassee office at the end of law school.  These ladies had been at my wedding.  They were there through my pregnancies and heard all the stories about my adorable toddler.  I was really going to do this — be a stay at home mom.  I never wanted that.  I mean, I wanted to be with my kids, and I hated leaving my son with a babysitter; but I liked using my education and my brain, too.  When we got out of the car, I held my office key in my hand, because I wasn’t wearing pants with pockets, but I didn’t want to lose it in the black hole of my purse.  I made small talk with the coworkers I hadn’t seen since the end of August, while they fawned over the baby.  The boss, office manager, and I went into the boss’ office where we had a phone conference with the big boss in Tallahassee.  I handed over copies of my resignation letter and started to cry as soon as I said that I didn’t know what Baby B’s life would be like, so I would need to stop working.  I did ask that they consider me for part-time or contract work from home when life became a little more settled, and they agreed.  Everyone was so kind and said they would miss me, but they understood.  I packed up my office (which was uncharacteristically clean, since I hadn’t been there in months), left my laptop with the boss, and said goodbye to my friends.  I was strangely happy in the car, as it went much better than I anticipated.  I didn’t know if my bosses would be upset by the news, but they seemed to be understanding and caring.   Now I could head home to focus on my babies (and my son) and try to figure out how to be the best mom to these sweet girls.

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

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.