twins

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).

Adapting

~ riadawson ~ Leave a comment

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.

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.