Facing It and Moving On

Now that my reflection is done, it's time to stare down the beast and be done with it.

And, so, I introduce to you, the source of my many months of terror and sadness: the esophageal duplication cyst that was in Sofia's chest. (Warning: not for the faint of heart.)

Here are photos taken during surgery. Her situation was so rare that they are writing up the case study for medical journals. Over the 9 weeks, her care cost $775,000, much of it paid by insurance, a very small portion of it paid by us. Worth every penny to save our daughter's life.

Now you see it, and now we never have to again.




I promise, the next posts will be about being a mother outside of the NICU. You know it can only get better from here.

Mama loves you, Sofia. You are all better now!

PTSD: A Reflection for Posterity

Ho hum ho hum. Sofia breezed through her NICU adventures whilst Mama was a sad, sad girl. But there was plenty of joy too. Just joy that felt rough around the edges.

From time to time, I will scroll through the dozens of photos I took of Sofia on my phone while sitting next to her crib for hours and hours. I pretty much always cry. Sometimes I rush through them, but sometimes I move slowly to try to remember. And, so, I can say definitively, they were right: you do forget. I remember it a lot shorter than it was though when I work to make it clear in my mind, my heart sinks. So I let it stay away.

I've done a bit of reading about NICU impacts on parents. I remember feeling very comforted when I read that it was reasonable to have post-traumatic stress after surviving a NICU stay. I felt that way, sometimes I still do. When faced with situations that feel potentially hazardous or surrendering control, I am definitely not smooth. My friend Lauren called it "disaster mode." I'd say that's an apt title, for I feel rushes of anxiety, heat, worry, sadness, shakiness. I feel like I'm drowning. And when it comes to protecting my daughter, I feel like a preying mantis of a mother, tall and mean-looking but thin as rails, and very breakable.

There were things that I saw in that NICU that...

I saw a lot of parents cry. I saw new mothers pour earnestly in cyclical rotation in and out of pumping rooms, all of us working to keep up a supply of breastmilk in hopes that things could be as we hoped. I saw infants smaller than they make dolls, and I remember thinking how they didn't look like real humans, they just looked like dolls. I saw tufts of red curls peeking above tubes and swaddles. I saw medications rolled in and out, all in little trial sizes. I saw grandparents and parents hugging, sobbing, smiling, laughing, wishing. I saw parents show up to feeding tube class with stained eyes.

I saw parents rush into the family waiting area, and tell grandparents that Baby Boy was brain dead. I was on the phone, on hold, trying to get some kind of inane business done and I just started to cry, witnessing this. I saw mom hugging her toddler daughter (now big sister), rolled up on the ground, and father telling grandmother how sad he felt. I saw them for another two days and then I never saw them again.

I saw surgery prep, big equipment, haughty doctors, all crowded around babies only about a foot long. I saw so many nurses, soooooo many nurses, some of them over and over again and some of them just once, for 8 to 12 hours, and then never again. And they saw me, in my most raw moments, telling them This is Not Acceptable, She Gets the Medium Sized Mask, pulling the elastic away from my baby's face.

I saw the outside of a CT Scan room. My husband and I sat on the floor while our daughter received something like 1/10 of the radiation she can be exposed to in her lifetime so that her doctors could see why she wasn't breathing right.

There was nothing normal about bringing a baby into the world and then sitting in limbo for weeks in the NICU. People would say congrats, you must be home by now, how is it? And I'd say, nope we're still here.

I saw multiple sets of parents be consulted about ECMO, extracorporeal membrane oxygenation, during which the baby's blood is diverted out her body through her neck into a machine to be properly oxygenated before going back in. I remember hiding behind my nursing screen, sitting next to Sofia's crib, reading furiously about ECMO on my phone, tearing up, while I heard parents being told their daughter might not survive without it.

I saw parents pity each other, smile little smiles at each other (big ones didn't feel too allowed), hug each other, waddle through c-section recovery together, learn to nurse and pump together, and relate. I remember I walked back to wash my pumping supplies at the sink in the back of Sofia's shared nursery room and another mom was there, crying, while labeling her bottles. I put my arm on her shoulder and I said It is Not Supposed to Be Like This. It's Okay to Feel Bad. And, then I remember, when her son went home, much sooner than Sofia did, and, full of jealousy, I resented that moment for days after, thinking...she should have been making ME feel better.

I remember the day when I started singing Alouette, a French tune I learned in 8th grade, to Sofia. I cried through my first singing. She became very still and listened sweetly. She still loves that song.

I saw parents stand weak and prone as video cameras were set up around their daughter to keep record of her seizures. I saw dueling red headed babies, both with congenital diaphragmatic hernias, across the aisle from each other. I saw parents reach into plastic shelters over their children. I saw them skim their breastmilk. I saw parents get tours of the NICU, like we did, with big eyes, completely confused and I'm sure completely unprepared.

The surrealness of the NICU is unparallelled. You walk around too fully present to think of any place else, but so wishing you could be anywhere else. I remember feeling so guilty: I wanted to spend every minute with Sofia, but I wanted to get the hell out of there. We made a little home in her NICU cubby, but I always hated every square foot of it.

I saw Mother's Day in the NICU. Everyone dressed up, taking pictures. In my pictures, Sofia has her CPAP mask on, but you can see I'm still beaming, holding her sitting upright. My Mom cried every time she first arrived to Sofia's crib and every time she said goodbye. There were very many happy moments, but it felt heavy and intense.

Nothing was more surreal than her last day though. It was a Sunday, June 5. She was two months old. Just hours before I was ecstatically jumping up and down, celebrating doctor's orders to send Sofia home, hugging the nurse practitioner, a little boy was brought via helicopter to the cubby catercorner from Sofia. He had CDH and, his body was not able to oxygenate his own blood. Many of his organs were on the top side of the body where they weren't supposed to be. His father, an orthodox Jew, prayed next to his crib. I heard him call his wife, the boy's mother who was recovering in a hospital, and ask her if she was able to come, baby might die. Rabbi family members streamed in and out. They apparently never received an ultrasound and so had no idea of the challenges their son faced. I heard the doctor tell him that ECMO was the only way to save the boy's life, and that he might not survive even with it.

And, all the while, just a few feet away, but emotionally on the other side of the earth, we were packing up to go home. Rushing because we had to go before they started surgery. They were bringing in the ECMO equipment and calling in the big name specialists to figure out how to put this little baby boy's body into the right place. And I was stacking congratulations cards and shoving nursing bottles into plastic bags. My husband and I were elated, but we felt sick still being witness to what was happening on the other side of the earth, the other side of the nursery. We were cheerful with nurses who had to then solemnly cross the aisle. Our friends came and said goodbye, but kept their backs to the praying father. My head felt tired, like it had been around the earth, across the nursery, but now on this side.

And the car seat went into the car. And we three went home.

Months Later

I suppose it's now time. Our daughter Sofia is 6 months old. And she is a wonder.

She has more than doubled her birthweight plus a couple more pounds. She is over two feet long. She breathes like any infant should. She is dealing with some mighty reflux, and well, she doesn't poop all that much (two weeks is the longest stretch yet), but she is a fiery, chatterbox of a nugget, screeching with glee at least hourly during the waking part of the day. And grunting with discontent when we aren't doing it right, as any daughter of mine would.

Her most recent accomplishments include sitting up on her own, lengthening her tummy time tolerance, shaking it like a milkshake, throwing toys overboard the car seat, and napping outside of our arms. And this past week, she is clearly attempting to laugh. When she, my husband, and I get silly, it's a barrel of them, and she does her best to imitate our belly-deep giggles.

Anyway, the three of us, through me, are back here to get at it again. There are so many daily adventures and strange musings and moments requiring great patience that my brain would do better to pour them out to you all. So, I'll see if this will still work. Because, well, the baby is okay. She is great. And this was a place for trying to make sense of sadness and hope, but now it'll be a different place. Let's see how this goes.

Sofia, recovering

As of last night, our daughter Sofia, now over 7 weeks old had the following: one PICC line tube delivering HAL and lipids nutrition into an artery in her left arm, one nasogastro feeding tube through her nose to her intestine just past her stomach delivering monogen (a special formula), one sump pump tube to her stomach pulling out air which is brought in by her CPAP breathing assistance machine delivered via a mask over her button nose. Hm, what else...oh yes, the sensors, leads attached to three places on her abdomen, another on her foot, keeping constant monitoring of her heart rate, respiration rate, and her oxygenation.

And still we hold her. I pull up my nursing tank and peel down the nursing top and hold beautiful Sofia to my bare skin, skin to skin. It feels remarkably right, I kiss her head over and over faster than I can take breaths, and I somehow shiver with warmth. It's euphoric, being close with her. She is perfect.

With all of these tubes (this doesn't include the two chest tubes she's had in the past as well as peripheral IVs) and all of this intervention, I'm very thrilled to say that the last week has brought some real, consistent recovery. Sofia is doing so well, and I feel like I can finally envision home. Up until recently, it was two steps forward, one step back. We're hoping it's just forward this time.

Sofia had major chest surgery on her fourth day of life, a small little nugget of a baby. The esophageal duplication cyst (they confirmed it in biopsy after the surgery), this thing that ruled our lives, was removed from her chest. We hear it looked like a big sausage; pictures yet to be seen have been saved for us. It was very large, the largest one the surgeons have ever seen and even that they are aware of. When they cut the first incision into the right side of her chest, the cyst ballooned out through the hole. And they removed it straight from her throat down past her diaphragm.

The recovery required patience. Sofia was intubated for several days (it's painful to see your child intubated, raspy screeching because tubes interrupt function of their vocal chords), she had a chest tube to remove excess fluid, and she was under serious sedation and painkillers. But her recovery was moving very well, and I thought our NICU stay might fall within two weeks or so.

And then they discovered that she had chylothorax, a leak in her thoracic duct which is not uncommon with chest surgery. That meant another chest tube, no feedings (the fat in breastmilk exacerbates the leak), and long days just waiting for the leak to drain.

And once that felt done (please let it be really done), they saw through clinical evaluation that Sofia was breathing quickly, working hard to breathe, and through CT scan they learned that part of her right lung was deflated. Since then, she has had breathing assistance devices to blow pressured air into her lung to fully inflate it.

In the meantime, they saw that she had an infection and treated her for pneumonia.

And now, finally, 7 weeks in, her xrays are showing a fully inflated lung, she has just started "eating" again (a fat free formula for now, my breastmilk skimmed next), and clinically she's in excellent shape.

She has never felt like a sick baby at any point along the way, always a bit ruddy, curious, eye-batting, and so very strong. Her chicken legs can kick! I watched her tear off her oxygen mask once in an annoyed fury. She has been called rambuctious by nursing staff. She never cries except when she is in serious pain. I watched her get stuck with six needles in one day and she never shed a tear while I gushed waterfalls.

The nursing staff and docs have a special affinity for her. When they come and do rounds to plan her care for the day, they often will come over and coo first. Several have said to me, don't tell the others, but we really think this baby is the bee's knees. The doctor who drained her cyst while she was still just a fetus came by and said, this one is really a looker. It's true, some babes come out needing a bit more time to settle their faces. Sofia came out, even though early, ready to take a bow.

While we never thought we'd be in the NICU this long, the doctors remind me that this level of attention to Sofia's breathing and her right lung was no surprise to them. She faced what they call a triple whammy: huge cyst in chest compressing lungs all through in utero development, big interference through major chest surgery, and chylothorax/pneumonia/general fluids in her lung that shouldn't be.

We have tried to operate with as much patience as we can muster, but there's nothing normal about loving and caring for your child in the NICU. But I don't feel like crying right now, so we'll leave that post for another time. Those posts, really. It'll take a few to get all of that out. But they will come eventually.

For now, I can just thank my lucky stars for the following: the most wonderful family and friends whose prepared meals, comforting texts, inquiring emails, and cards of congrats have provided us with a net of love that I let myself fall into when it's time to jump out of reality. And also for the following: Sofia's continued recovery and good health, her big eyes and her pointy chin (it's mine! yes!), her stillness and raised eyebrows when she hears my voice, her powerful suck, her evident wonder and interest in things around her, and her future outside of the NICU, in sunlight (those lucky children that have been frolicking in it for days), in our arms, in my arms, feeling my kisses, returning my hugs.

The Arrival - 4.1.11

Sofia arrived in an intense adventure, attended by more doctors and nurses than I've ever seen for a couple of patients. A few of them were focused on me but the vast majority were prepared for whatever her arrival would bring.

While the procedure was originally scheduled for March 31, the neonatologist in the March 30 team meeting insisted that I receive two doses of steroid shots to promote Sofia's lung development prior to her delivery. Because she was born one day before 36 weeks (four weeks early and one week prior to full term), she was missing some lung development time. That pushed back the procedure to April 1, which I have to admit, made me happy. There's something elegant and pronounced about a birthday on the first of the month.

Anyway, we had to report to the hospital at 6 AM for a scheduled 8:30 AM delivery. Before the procedure, we met several doctors whom we had never seen before. Docs for me, docs for her. My husband and I tried to ask questions but it was a bit cloudy in the brain when you think you'll meet your daughter within hours. The plan was to give me a spinal tap to make everything numb, drain Sofia's cyst, and then deliver her by c-section and then pass her off to a slew 0f docs who were ready for her complicated little situation.

Not everything went according to plan. First, because of mild scoliosis that I have, the spinal tap/epidural administration had to be done three times. It was very painful for me, and each time they started inserting the catheter, I could feel it so it was time for another try. That got the room tense, before that we were high-fiving, making jokes, me and all of them (Nico joined us later). I could hear the docs I knew well become subdued, give me tips to better position myself for the shots, start whispering. The anesthesiology nurse who helped me was covered in tattoos, he had thick chest hair, he was burly and large, and I buried my face into his chest and quietly cried.

Once it was all said and done, they laid me down and prepared to drain the baby's cyst. The sonogram machine didn't work though. Something about a bad wire. I'm not sure. But it was yet another SNAFU. I cried again. Once the machine was up and running though, it was only a about a minute of ultrasound before they concluded that the baby, after all this time of being in the right position for anything we needed, was not in her best position for cyst-draining. They moved me on to my side, but, no change. Babe was coming out, cyst and all. I know that this decision sparked a game of telephone down the lane. Now they were preparing for a baby who had a chest obstruction and may face trouble breathing as a result.

Then my husband was brought in, and they started the c-section. When you get a c-section, you don't feel the pain of incisions or anything like that. Your outsides are all numb. But your "insides" aren't. You can feel pressure and movement. And while the docs were giving us the minute by minute countdowns, I could tell myself that the baby's birth was coming. When the anesthesiologist said two minutes left I felt it, and when he said one minute left, I already knew.

And, then, sigh. She was born. I heard her squeal a big loud cry. It sounded like music. It was so emotional and wonderful. My husband and I shared moments so intense I could do them no justice by using words to describe them. I will hold those moments etched in my brain, replaying them over and over, for the rest of my life. They were so wonderful. My husband shared the great news with our parents a few minutes after. I heard there were hugs and celebrations.

I never saw her face at that time. I wouldn't see her face until an hour later, for just a couple of minutes, her full of ventilating tubes and surrounded by at least four doctors wheeled into my recovery room for just a couple minutes en route to the NICU. I saw her though, and I crumbled with love, huge, fat, sagging tears of immense, undying, always there I knew it was there love.

I didn't see Sofia again for hours. I pumped in my room before I met her again. The OB apologized that I didn't get to see her face at the delivery but that it was a precaution taken by the neonatologists because the cyst was still in tact.

But, when I was wheeled down to the elevator plus four flights in my chair, still numb all over and unable to stand, I peered up at her bed. I could only see bits and pieces of her, but I still cried. It was still happy crying. There were people I didn't even know there, but they knew my moment. Our moment. Mine and Sofia's.

Those few days while I was recovering on floor 6 and she was living on floor 2 in the NICU, I made visits every few hours and reached up from my wheelchair and sent kisses from my fingers to her parts.

Little aka Sofia

Pregnancy is over, but the adventure has not ended. I look forward to writing more posts. But, before I do, the treasure of this is my beautiful daughter. Living perfection, Sofia Ciulla, born 4/1/11.

I can say no more. I am speechless.

35 Weeks, the Final Week

As of this morning, we learned that our daughter is scheduled for a health-related precautionary c-section to take place this Thursday. Her birthday will be March 31. 3/31/11. Here are the pieces from there to here.

The weekend before, really getting ready now, I mean it

I woke up on the first day of my 35th week feeling ready and determined. My Mom was coming into town, which would already make me feel better. I knew it was a matter of a couple weeks, at the most, if not just days, before the baby arrived so there was plenty to do. I made a list. And tried to plan stretches of activity alongside stretches of foot-raised rest. My husband went with his family to the Argentina-US soccer game, and I was relieved that he would have some special, happy time with his family after our intense hospital stay. My Mom and I had a nice time together, she worked her behind off doing laundry and cleaning and helping me plan through what I needed to do to become mom-ready in a baby-ready house. And we lounged and talked in the evenings. She stayed for a few days, helping me with so many errands and house activities, and taking me to my follow-up appointment on Monday while my husband was in NY for work.

Monday's appointment

I knew that they were going to find that I was even closer to labor. My Braxton Hicks were almost constant for many hours a day. I was seeing something different in my underwear. And Monday morning the cramping returned. I went to work for a few hours, my very generous boss ordered me to follow doc's orders and return home. Later in the day, my mother and I went to CHOP.

The decision to perform a c-section came about thanks to a perfect storm. First, they saw on the ultrasound that the baby's cyst had fully re-inflated back to its size just before they drained it, which was basically it's largest size yet during the pregnancy. Second, they found that I was still dilated but now 80% effaced, which means significant dissolution of the mucus lining that covers the opening of the cervix. The baby's head had moved down some. Third, my blood pressure soared, putting me at risk for preeclampsia and preterm labor. During the visit, they told me that a scheduled c-section was best with a draining procedure performed just prior so that they could ensure that when they delivered the baby, her cyst would be at its smallest size, ensuring room in her chest for ventilation. Then they would do their diagnostic tests, make a plan, and surgically remove her cyst before it re-inflated again, giving them about 3 days or so. They learned from the draining procedure how much time they had before it re-inflated, that it was definitely an esophageal duplication cyst (good news regarding the ability to remove it), and that it could be fully drained and that her lungs and heart would immediately move into their proper position. It was too much information to ignore, essentially, and with my body moving toward labor, they wanted to have a detailed plan. But, you see, at first the plan was to do all of this in Week 37. But when the perfect storm started brewing, they said they'd call me if it needed to be done earlier. This morning I got the call...Thursday would be the day.

Final preparations

Today felt like a whole different day after that call. While I wish that the baby could spend more time growing in the womb, there are too many confounding variables that might interfere with her and my wellbeing, and having a middle of the night labor just feels too scary. And, so, despite the fact that I have worries about her being born early, I know she's at a good weight, and that her health has been monitored about 100 times more than almost all other babies. She's doing everything right in there--practicing breathing, swallowing fluid, gaining weight faster than other babies her gestational age. There are a lots of strengths on her side. And, when I remember those things, I just get plain excited. I can't believe that I'll be able to hold her in a couple days, that she'll move from inside to the outside. That I'll have the luxury of being on maternity leave so I can spend time with her and support her growth and be with her. Yes, I'm nervous. I'm expecting an intense few days in the hospital as they care for her and support her in her transition to the outside world, but I have great confidence and I feel like she has shown us so many signs that she's very much okay. Yes, she has a "birth defect." Call it that if you want; others do. But it has just been one part of all of this and all of the other parts have been so plainly normal and wonderful. I feel like all of this fits with my life in a lot of ways, that it makes sense that it's me and my husband with this special wonderful baby because we have the kind of thinking and will power and philosophies about the very special differences among people that make us great parents for this little girl. Many months ago, when I felt my worst through all of this, I mourned her. I did. But I never gave up on her. And, at that worst of times, I felt like I did something wrong. Like I created a poor home that led to her having some challenges, but now I realize that really the coincidence of us having this awesome baby is cosmically related to us doing something right, being the people that we are, receiving the gift of a girl who needed a different start and parents who would honor that. I really feel like I know how to honor many different kinds of experiences; my parents taught me that. And so we're lucky to have her, and I think she's lucky to have us too.

I'm looking forward to spending tomorrow night with my husband. It'll feel like Christmas Eve!