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!

34 Weeks, Part 2, The Dawn of the Ending

Well, let me tell you: I would not wish any fetal cyst draining procedure on my worst enemy. Not that I know who my worst enemy is, probably ain't even a woman, but if she were a woman, I'd never wish on her the experience of seeing the start of the insertion of a long needle into her womb which fishes around and then sticks and slides in between her baby's ribs. So, yes, I can conclusively say that the procedure was painful and scary and mentally taxing. My husband even said it was one of the most intense and scary experiences of his life. He had to watch the whole thing and keep me focused on cooperating.

I entered the hospital that morning in a seriously foul mood. I was so anxious about the procedure. There was a woman who cracked a joke about going to the same floor as me, hardy har har, because well, I was pregnant, and that's where pregnant people go in CHOP. Nico politely laughed, I just gave her a blank stare and kept pressing the Door Close button, which subsequently kept the elevator doors closing on people. I sort of apologized every time, but honestly, if I could have just had an empty elevator ride to the 5th floor, it would have made me just that much more comfortable.

Once we were among the CHOP doctors, my mood did lift quite a bit. They know me well now and they always seem happy to see me. I made jokes with them. One doctor pretended my fleece socked feet were car shifters, and he "raced" my feet. Another lady doc who I'm especially close with joked that she was impressed with how I even wore pretty underwear for my draining procedure at the hospital. I know, some of this may sound strange to you based on how you know doctors, but I feel close to these people. They have been seeing me at least every other week for months, watched me cry and laugh a million times over, and, most importantly, been stewards of the growth of my baby, which is a pretty goshdarn intimate thing if you let it be, if you embrace it that way. Plus, they just like me. I can tell. We have good rapport.

The jokes all ended though as soon as I saw them pull out that needle. I turned my head quickly to my husband, held on to his hand for dear life, and started to try breathing exercises. They talked me through the early parts, but then left out the scary parts, I learned later. Yes, the needle hurt when they put it in. But that was not nearly as disturbing as when they were fishing for the baby with it, and trying so hard to find the right moment to try to insert it in her. And what was most scary of all was feeling my baby try to get away, curling herself into the opposite side of my womb, away from this foreign object. The whole team became very quiet, I heard them whisper pleas to the baby to stay still and cooperate. My head was dripping sweat. My husband was talking me through it, rubbing me, and the doctors were complimenting me throughout too, telling me I was doing a great job. They reminded me to take deep breaths. And then, soon after my husband said it was almost done, it was done. The whole thing took about 40 minutes. My sense of time was skewed but I looked at the clock enough before and after to know. My husband told me later some of what he saw. It was painful for him to watch both me and what was going on internally on the ultrasound screen. But he did say that once they put the needle in the baby, she stayed very still, like a good girl.

A risk with such a procedure is going into preterm labor. And within 15 minutes, I was cramping. A few minutes later, I started having full on contractions. I only learned later that the fact that I was feeling them so strongly was an indication that they were very active contractions (uncommon for women in their first pregnancy), and this was no surprise because 45 minutes later when they checked my cervix, they said that I was dilated.

I had to stay at the hospital until things slowed down, but they just didn't. I had very active contractions for about four or five hours. There were a few things that people have told me about contractions that didn't stick very intensely until I was experiencing them myself, like the fact that certain sounds are extremely irritating. My poor husband was trying to eat some food, starving, and the sound of him chomping down on salad made my ears burn. I had to tell him to be quiet and stay still a few times while I was having contractions. A couple hours in, they gave me medicine to try to stop everything. Eventually, the medicine worked, things slowed down to an eventual almost stop, but the cramping kind gave way to a rapid on and off succession of Braxton Hicks, which has not yet stopped to this moment. That was five days ago.

They admitted me that night and it was a long, miserable night of constant peeing, an uncomfortable bed, hands swelling around my IV. I remember watching Last Call with Carson Daly in the middle of the night and couldn't help but imagine what company I was in. The nurse had to come in every half hour to reassemble my uterine and fetal monitors after every trip to the bathroom. My husband stayed overnight with me and he was awoken too, every time. I had the nurse take out my IV in the middle of the night because my swollen hand was aching.

The next day though, exhausted, I just begged to go home. I was still having active Braxton Hicks contractions, but not labor contractions. They gave me a cervical exam and I was still dilated, but at 1.5 centimeters, and no more than the night before.

They did an ultrasound and even I could see that the cyst had at least partially re-filled itself. Fortunately, not that much yet--it's original size of 100 mL of fluid was down to 19 mL, but still the fact that it was re-filling was concerning. They sent the fluid to the lab and would have results soon to tell us more about what the cyst actually is.

It felt more clear that this pregnancy was not going to go on for much longer. They let me go home, ordered me to modified bedrest, scheduled me for a visit three days later, and gave me tips to keep from going into labor again. It was the dawn of the ending. I came home and took a five hour nap.

34 Weeks

Well, the first day of my 34th week was my baby shower, which was a most splendid affair that felt really special and wonderful. There is really nothing like spending time with so many of your family and friends all in one place. It happens so rarely in our lifetimes. I'm so thankful for all of the people who hosted and organized and made food (yummmmm btw) and drove an hour and even much longer to come spend time together. I started bawling as soon as I walked in the door--happy, touched tears. I really appreciated the support immensely. I'll post some photos soon enough.

In the meantime, I want you all to have an update from this morning's visit as events are progressing more quickly than I can document them.

I went in for an ultrasound this morning and they saw that the cyst grew in the past week and they are concerned about compression of the baby's organs so we scheduled a procedure to drain the cyst this Thursday at 1 pm. They are not sure if they will need to sedate me and the baby--that will be determined on Thursday. They will have docs on hand to do a c-section if for some reason I go into labor or if the baby shows any signs of distress.

They will insert the needle through the baby's side in between her ribs to drain the cyst. They feel that the cyst may very well refill with fluid but it will reduce compression in the meantime. Depending on how quickly it refills, they may do the draining procedure again right before they deliver the baby. At this point, I am having either a c-section or EXIT procedure. The doctor said that she hopes that by draining it, I will be able to have a regular c-section instead of the EXIT procedure.

My blood pressure increased again and they are not happy with how much my feet are swelling so a shorter timeline to delivery is still what they are talking about. Again, they said likely at 36 or 37 weeks. I hit 36 weeks on Saturday, April 2.

The good news is that the baby's heart and lungs look very healthy, other than being compressed by the cyst so they are happy that the compression will be relieved this week. Also, the stomach looked better this morning than last week so her swallowing seems to have picked up again. That's great news. The sonographer said that the baby's bladder looked full so that was a good sign.

Nico and I are working every night to try to get the nursery ready. We bought a dresser on Sunday and we picked up a crib and changing table from friends. I called the painter and asked him to do one more coat of paint in the nursery--it needs another one--and that's tentatively scheduled for Thursday morning before our procedure so all of the baby items are in the office ready to be moved in to the nursery once that's done. In the meantime, Nico is assembling furniture and I'm trying to organize other things in the house and clean. My Mom will be coming this weekend to help, and I already started making a list of things we will do together, including wash and put away all the baby clothes and pick up final items we need. Whew!

The baby is six lbs so we have a big healthy baby who is ready for whatever happens.

xoxo, amanda

And, again, xoxo, Amanda. Little, take a bow.

Also 33 Weeks

This week's ultrasound and prenatal care visit brought some news. The baby was moving a lot as usual, and she was practicing breathing the sonographer told me. Her chest was heaving so I was initially worried but the sonographer said that it was a great sign. The doc came in and confirmed that the baby was doing all the right exercises to be ready for life outside the womb.

The baby's heartrate was fine. She is swallowing a little bit less fluid, her stomach looked very small to the doctor, so they suspect that she may be starting to have some swallowing issues now that she's bigger. They measured the fluid in my uterus and it shows very mild polyhydramnios (their cut off for polyhydramnios is a fluid measure of 22, my measure is 23, so very mild). Polyhydramnios was something they mentioned to us a long time ago as a possibility. There is only a slight increase from last week so they are comfortable continuing to monitor it. If they see a drastic increase or if I start to have additional symptoms of severe swelling, then they will do an amnioreduction which is putting a needle in and draining some of the amniotic fluid. The goal of this would be to prevent preterm labor.

At this point, however, the doctor suspects that the baby will be coming early, and it appears that it is more likely that we will be doing the EXIT procedure where they will open me up via c-section incision and then partially deliver the baby, insert an IV and breathing tube in her, and then fully deliver her. They won't do surgery on her at that time but will instead check out how all of her bodily functions are working before making decisions about her surgery.

The doctor said that the goal right now is to keep the pregnancy intact until at least 36 weeks, 37 weeks would be even better. She said that the baby may be coming early because her organs are being more squished and it may be impacting more systems, like her swallowing, for example. We could see her licking the fluid, trying to drink it up, but things may be a bit constricted on the inside, preventing her from fully swallowing like she was able to before. The doctors want her to remain in utero for as long as possible, but want to schedule a procedure before she experiences any harm. For the time being, though, the doctor said she was a "happy baby" because she's exercising and moving normally. Also, her heartrate and blood flow are normal, indicating that her brain function is fine.

The doctor said that we will develop a birth plan by 35 weeks, which is in two weeks from now. We could be meeting the baby in as little as 3-4 weeks if needed. (Whoa!!!) If they have to, they will do an amnioreduction between now and then.

I asked the doctor about the cyst draining procedure. She told me that she was one of the doctors on the "no" side. She said that while they have lots of experience draining cysts (she said they do it at least once a day), there are many blood vessels and nerves in the baby's neck and she doesn't want to do it unless it's absolutely necessary. She also said that while this cyst is most likely an esophageal duplication cyst, there's a chance that it is something else with an interior composition that would be difficult to drain. One example is a kind of "tumor" created by the lymph nodes where they create too many cells. In this case, the substance inside the cyst would be sticky and thick and difficult to drain so it would make the draining procedure worthless. She feels it is an unnecessary risk at this point. She said that it is VERY likely that it is an esophageal duplication cyst with a liquidy substance, but they won't know for sure until the baby is born and they investigate. Either way, they can do surgery to remove it after she is born.

I talked to the midwife about the fact that last Wednesday I had pretty regular contractions every five or six minutes for about 2 hours and immense swelling in one of my feet. They said it's a bit early for that kind of "practicing" that the body does, and it may be linked to the fact that my fluid levels are a little bit higher than normal. From here on in, they've asked me to come in even if I think it's a false alarm because having extra fluid is linked to preterm labor and they'd rather play it safe. I've got a list of symptoms to be on alert for, and I'll head on in to CHOP if any of them pop up. My driving radius is an hour--the doctor nixed a work event I planned to attend next week in Dover, Delaware, which is about 1.5 hours away. The doctor said I should be keeping commitments to a minimum for the next four weeks (I guess she feels the baby will be here by then) and doing a lot of lying down on my left side to promote circulation and reduce swelling. I'm making arrangements at work to get things wrapped up sooner just in case.

Lucky for us, the baby is on the bigger side, she's over 5 pounds by now, which is large for her age so if she has to come early, she's already in good shape.

My next appointment is next Tuesday--I'll be doing weekly ultrasounds and prenatal care visits so they can watch both baby and me even more regularly from here on in.

The sonographer humored me and turned on the 3D ultrasound today so I watched the baby in 3D for a few minutes. She is really, really beautiful. She made lots of cute faces, she looks just like a normal baby now with chubby cheeks. She has very full lips and a perfectly round nose. She didn't open her eyes for me but she did a lot of licking of the fluid, and she even licked the back of one of her hands like she was a kitten. It was excruciatingly adorable! She is a very active baby, and she clearly loves touching her face with her hands. I do have new pictures! They are adorable but they don't do her justice. She is just beautiful.

And, well, with the federal budgetmaking in crisis mode, it's a help to have all of this going on at CHOP. The doctor said I've learned enough about fetal anatomy and pregnancy now to get myself a job there. So, if the new Tea Party congresspeople start cutting federal jobs, I know who I'll call.

33 Weeks

The baby's room is painted. The color is called everlasting peach. I love the name of it. In the morning light, the room looks orange, and at night, it looks pink. I suppose that's the magic of peach. I'm enamored with it.

The fact that the baby's room is painted was my only consolation last week when I went into false labor. I've had Braxton Hicks contractions for weeks now, but on Wednesday I was feeling contractions every four to five minutes for about two and a half hours. I was out to dinner with my friend Jess and was brought to silence every few minutes to try to absorb what was going on. It was pretty intense.

Fortunately, after a couple hours of this, I called an OB at CHOP and, wouldn't you know, the contractions slowed down and within an hour or so, stopped. There's something magical about getting the doctor on the horn. Things just seem to start working out again. That happened earlier in the pregnancy when I didn't feel the baby move for a day. After plenty of time to fret, as soon as I got the doctor on the phone, the baby started kicking again. Maybe if I get some serious gas in the next few weeks, I'll just call the docs and hope for the best.

In any case, when I was having the regular contractions at home, I moved very quickly into high gear. I scanned the first floor and lunged at anything that needed cleaning or was out of place. I took out the trash, I threw some dishes into the dishwasher, I folded blankets, all while taking breaks to just get through the contractions every five minutes. I'm sure it would have been a comical sight. Then I sat down on the couch and studied my phone to start tracking them. Fortunately, it was just my body's trial run. We're not ready for the baby yet! I mean, yes, her room has a color. But it has no furniture yet! On Wednesday night though I did think to myself: it's okay, her room has a color...it has a color...it has a color. It was the saving grace of the moment!

Now I'm 33 weeks and officially in the zone where my body takes license to practice labor. Things are getting pretty serious, folks! Baby is on her way. We're very fortunate to have friends and family who will help us get prepared quickly in the next couple weeks, and I'll be so relieved when we have a room (with furniture) ready for her. Even if she has to spend weeks in the NICU, I'd be pained to think that she had no room at home ready for her.

The belly keeps growing. Even when I look at it and think, it couldn't possibly get any bigger, it does. Tonight I ate Indian buffet with Jared. Oh my, I think that's the last of my Indian buffet dinners until after the baby arrives. There's not enough room in my belly to fit five pounds of baby and a plate of curry!

I feel the baby move plenty still but the sensations of her movement have changed. Now that she is bigger, I don't feel her constantly floating around. She's clearly in her spot and whenever she makes a drastic change in position, like turns on her side, it's a very intense feeling for me. I can even see it on the outside of my belly--it contorts and changes shape.

In addition to my growing belly, my mama mentality is expanding. I am feeling more and more like a mother, feeling drawn to mothers, thinking about how mothers identify themselves and how they deal with the moments life brings. I find my thoughts wandering into new directions, thinking about things a little big differently, all the while still feeling like myself and having my own usual thoughts and questions. It's fascinating to hear myself sound like me but also sound like someone different too. A different version of me. I try to picture myself holding my child, and, at the moment it's still hard to envision sometimes, but it's very easy to imagine the thoughts and feelings that I will have. I can only guess it's because those thoughts and feelings are, to some extent, already with me. I hope the difficulty in envisioning myself with the baby is not because of her health but just because it's really the next level and I'm just not there yet.

Last night, I went to Julia's housewarming party and there lots of mothers there who are close to me in age. It was so gratifying to have mama talk. I was completely tuned in and fascinated, craving more information, listening to stories. I loved it all. I was very happy to exchange contact info with at least one mother so I can further broaden my circle of young, hip, city moms whom I can learn from.

32 Weeks

And then today.

The doctors decided not to drain the cyst today. One doctor told us that they are not in consensus about when they want to drain the cyst so they did another ultrasound and will talk about it later today. He said that they will call me if they decide that they want to drain it right away. Otherwise, we have another ultrasound appointment in one week.

At least some of the doctors don't want to drain now because the cyst could re-fill itself again before labor and then that would put them back at square one. They want to wait until later in the pregnancy to drain. Another issue is that they are not sure what kind of fluid mass is inside the cyst--will it be very liquidy and easy to remove or thick and sticky and hard to remove? They plan to use a very fine needle and they aren't sure if that will be sufficient to take out the cyst's interior substance. Also, some doctors feel that the lung development won't be negatively impacted in the coming weeks because there has already been lots of time for healthy lung development. And if there is any preterm labor, the baby will be further along.

It appears however that there is at least currently consensus to drain the cyst before the end of the pregnancy because they is concern that the lungs won't have room to inflate once the baby's born. The doctor we met with today (who also saw me last week) said that he is in favor of draining now--he has already made his position clear to me and to the other doctors--but he said that he would bring back info from today's appointment and meet with the other doctors later today.

In any case, the baby looked very healthy today. Her heart rate was fine, she's moving normally, the fluid level was a little bit raised but still fine, and fortunately, they don't see any indication right now that the cyst is blocking her airway. That was some good news.

Unless we hear otherwise, we'll be heading back in one week.

I have to admit that walking into the ultrasound room, I had a feeling that they weren't going to do the draining procedure today. When I walked in, the doctor said to me: you look very relaxed. I said: maybe it's because I don't know what we're getting into today. And he said: well, not very much, not today. And, simply, that was the moment I felt that punch in the gut...they know a lot but they don't know it all. And when he said to me: there's not consensus among the doctors, I wanted to wail. It is absolutely in the baby's best benefit that there's a whole team of very skilled medical professionals concerned about her welfare, but the fact that they are disagreeing about what to do was hard to hear. It reminds me how much of this is unknown, and how they are just simply people trying to do their best. And how good is the best of people who just might be the best if in the end they are just really trying, not perfecting, not knowing for sure? You see, anything but 100 percent certainty is heartbreaking.

I am not sure at all what I'm supposed to feel today. Maybe that's why it has been a long, hard day...the uncertainty.

The baby is clearly trying to cheer me up. I'm lounged in bed with bare belly and every few minutes I feel then see her tracking limbs from one side to the other, like a comet you follow in the sky. She's waving to mama, even with her feet.

With all this distraction, it's easy to forget on these kinds of days that I'm so goshdarn pregnant and so goshdarn close to the baby's due date. When I first learned I was pregnant, I somehow never imagined being this pregnant. I remember seeing how big Sydney's belly got, amazed, but still couldn't imagine something like that on me. Well, it keeps getting bigger, and I'm thrilled because baby is getting bigger and closer to being ready for the outside world. If something in her body triggers her to get the heck out of dodge, at least she's five pounds and more ready to be healthy outside the womb.

Bigger belly isn't all. My feet have gone from a size 7.5 to a 9. I only know that because I allowed myself to pick up a pair of 16 dollar loafers that I'll temporarily wear for the next eight weeks. I have outgrown a few of the maternity items I bought early in my second trimester. I can't wear my engagement ring anymore, and my wedding ring is a bit of a battle too. I walked four miles at the Schuylkill River on Saturday afternoon, in short sleeves nonetheless, and I was worried my feet were so swollen that I wouldn't be able to drive myself home. My cheeks are so wide that you'd guess I'm always smiling. Our cat Nadja always comes hunting to rest on my belly, it's the best full stretch pillow for her. A few times her purrs on my belly have summoned Little into action. The carpal tunnel in my right hand means I'm wearing a brace for sleep and another one for daytime, and I have had barely any sensation in a few of my fingertips for weeks. This is a very interesting place, and I feel like even though so many women have gone through this, it's still so new and like a mystery constantly unraveling. It's really a larger story unraveling since our baby is so special. When I started writing this, I never could have imagined that it would tell this kind of a story. And as much as it is hard sometimes, it still feels like a fairytale.

My husband and I have taken childbirth and baby care basics classes. We've practiced breathing techniques for labor (who knows how much of that I have ahead of me), swaddled and bathed dolls, giggled through strange delivery videos, tested strollers for speed, confounded ourselves with infant car seat contraptions, paced across nursery paint colors at Lowe's, and had long go-nowhere discussions about our baby's future name. We've also cried and hugged and held hands and stopped the car just to talk and process. We've studied fetal anatomy. We've read articles about obscure in utero surgeries. And none of it, even the most regular, expected parts of it, have felt normal or inane. It has all been so very new. And it has all been one big experience, not two separate paths: preparing for baby and preparing for baby's special health needs. Just one path: making a family or, really, just being a family already, the best way we know how.

31 Weeks

This is the email that I wrote for family. A new turn of events, I suppose, if you can call it that...

I had another ultrasound today. The baby is in good health right now--she is 4.7 pounds, at the 71st percentile so above average for her size. Fluid levels are normal so baby is still swallowing just fine.

Unfortunately, the doctor saw this morning that the cyst has grown in size and it is currently pushing on both of her lungs and her heart. Her heart is currently out of place and a bit rotated although it's functioning normally. Her left lung is pretty compressed. Everything is still working just fine though and she is not in any distress but they are worried that moving forward this will interfere with the proper development of her lungs.

The doctor told me that he believes that the best plan may be to drain the cyst in the next two weeks. I made an appointment to go in next Tuesday morning--during this next week he will consult with the other doctors and they'll come up with a plan. They may drain the cyst next Tuesday or maybe do another ultrasound and then drain it the following week depending on what they see next week.

Even though I feel nervous about the procedure and just plain sad that baby will have to get poked with a needle, the good news about them draining the cyst is that it will reduce some concern about her wellbeing for the rest of the pregnancy. The doc said that he believes that the most likely fluid substance in the cyst will be something that they can easily extract, and they still believe that the cyst is all one structure. The doctor said that they don't know if the cyst will grow back but even if it does, it will be much smaller so it will be more manageable to remove when she is born.

I didn't talk about it with the doctors today but I have heard before that draining a cyst while the baby is in utero can be linked to preterm labor (not necessarily at the time of draining, but prior to 40 weeks) so perhaps we'll be meeting the baby before the end of April. I'll ask the doctor about this next week. I'm very anxious to get everything in our home ready just in case.

I was told today that I will likely have a c-section surgery of some kind when she is born, though regular delivery is still a possibility depending. The doctor spent some time looking at her neck to try to see if they think the EXIT procedure will be necessary but since they will likely drain the cyst, it will still be some time before they know for sure.

I met with the anesthesiologist who explained procedures for c-section and the EXIT procedure. C-section is standard, Nico would be in the room, etc.

If we have to do the EXIT procedure, they will have to put me under general anesthesia (GA). GA is not recommended for pregnant women because there's a risk that the patient will breathe stomach acid into the lungs. This is possible because pregnant women's stomachs are squished by the baby, and all of the muscles that would normally keep stomach acid down are relaxed not just by the anesthesia but also by pregnancy hormones. Because I have acid reflux, this is more of a risk, but the anesthesiologist said that they will take quick, extra precautions to reduce stomach acid and insert a breathing tube to avoid these problems. He said that he's been doing this with pregnant women for a few years now and they have not had any bad situations.

If they do the EXIT procedure, Nico will be in the waiting room. He'll get to see the baby first when she is stable. They will wake me up about 30 mins-1 hour after the procedure but I will be on pain medication so it may be a couple of hours before I get to see the baby. If I'm recovering quickly and the baby is stable enough, they'll bring her to my room to say hello. If not, though, then they will take me to see her in the NICU after I've had a couple hours to recover. I just want someone to give her a hug! Maybe I'll pick my favorite nurse that morning and ask her to do us the favor. :)

AND with all that, my blood pressure was slightly elevated this morning. The midwife said this is not uncommon, especially considering the circumstances. So, she gave me three symptoms to be on watch for, and if any of them pop up, I should call them and come in, any time of day. Generally speaking, I'm absolutely fine. I was even called thin for 31 weeks of pregnancy this morning three times by the different docs so, hey, at least my ego feels great.

Oh yeah and...this morning I saw the baby stick her tongue out and taste the fluid! The doc and I had a nice laugh. I had a cranberry muffin for breakfast so I was tickled to see that she likes the taste as much as I do!

So, yes, more news. I'm tired of news. I enjoyed uneventful for a little while there.

I've been trying desperately to find more information online about draining fetal cysts in utero. I may be too mentally exhausted to really look in the correct way. My plan for the moment is just to show up on Tuesday morning and hope for the best. At the moment, I'm most sad that the baby will feel hurt and deem my womb an unsuitable home. My mother reminded me, however, that the baby won't remember any of this. And, really, I think that's the least of my worries, realistically.

I don't know if I'll be able to watch the needle go in, but I don't know if I'll be able to look away either. Maybe I'll take the doctors' advice and do whatever they think is best. I am not even sure why the fluid sac that the baby is living in won't just deflate, leaving her no suitable home in utero. Maybe it's that stick a needle in the balloon trick?

And, now that I received confirmation that the EXIT procedure will require me to be put under, I can't help but obsess over the horror of being the last one to meet my own baby. Being literally asleep when she comes into the world. My husband is right: whatever they need to do to make sure she's safe is what we're willing to do. But I can't help but have a temper tantrum moment in my head--why me? I am so the mom that was going to be gung ho about a natural birth, and take every uncomfortable action necessary to provide for the most comfortable arrival of our little girl. I may be high on painkillers when I first meet my daughter. I suppose that will make for a good story?

I know I'm being selfish here. I really am so lucky to be in the best care in the country, maybe even the world, to have a daughter that has all the odds on her side despite what in some past era could have been fatal, to have a support network that feels hopeful with us and so excited too. I'm so lucky that such a procedure even exists.

But I am still mourning what I thought was going to happen. I'm still grieving my past imagination of how things would go. Believe me, I understand how lucky I am, but it's still shocking. And it still feels unfair.

I can only guess that when I actually see her safely born, none of any of those things will matter. Maybe I'll feel most comfortable curled up next to her little NICU pod, more comfortable than imagining us together on the couch at home.

I have gotten to know her so much more intimately in utero than most people ever do--I look at her move and live in the womb every two weeks. I've literally seen her grow. I have shared something special with her that most mothers-to-be just plainly never will. I know they would never envy my position, but I really am thankful that I have the connection that I do with her, that we're already so close because I've peeked into her space and watched for hours.

30 Weeks

The baby is in great health. She is 3.5 pounds, growing normally, and swallowing and recycling the right amount of amniotic fluid. The doctor said that the cyst did not grow in the last couple weeks (great news!) and there's no indication that the baby is having anything but a very normal fetal development period. Doc said "she has no idea that this cyst exists" so it's not causing any discomforts, which is a HUGE relief to me. The worry that she feels discomfort or pain has haunted me.

With that said, the doctor said that what they can't see now is her trachea, the air tube from her mouth to her lungs. They are having a hard time since she is so little seeing the exact place where the cyst meets with the top of the esophagus, near the trachea, so there's a possibility that the baby may have breathing troubles when she is born if the cyst is attached in such a way that it interferes with the trachea's functioning. In the past, when these kinds of cysts were not identified in utero, they were identified after birth because of babies' respiratory problems. The doc said they are not concerned about her wellbeing in utero since she is getting oxygen from me, but they will have to monitor to learn more what might come up after she's born. It's a big wait and see.

One possibility she talked to us about today is an EXIT procedure. EXIT stands for Ex utero Intrapartum Therapy where they start to deliver the baby by c-section, but while the baby is still attached to the umbilical cord, they perform surgery on the baby to clear her airway. That way the baby is secure with oxygen from me via the umbilical cord while they take care of any airway problems. Then they cut the cord and she is fully delivered. CHOP docs have been doing this procedure for some years now and they are some of the pioneers of the surgery. She said that they should be able to know whether me and the baby will need this procedure at about 32 to 34 weeks (that's 2-4 weeks from now). Hopefully, it won't be necessary but it's something for us to learn more about just in case.

All along, I've been very much aware about how unique our baby is--her cyst has confounded doctors or at least represents something "interesting" they've never seen before. Even during today's visit, the doctor said: "has anyone told you how interesting your baby is?" My husband and I said: ummm, duh, yes. Even so, the possibility of this kind of a procedure, so very rare, feels a bit SciFi to me. Just pondering the word intrapartum feels strange. Prepartum, okay, postpartum, even better...but intrapartum? There's not supposed to be any in between for babies! Just outside or inside! Well, not for Little. She's very special, and she may traverse a layer of the universe the likes of which none of us have ever seen. Special little baby.

We saw the delivery unit at CHOP. It looks VERY nice and the staff were wonderful. They were very welcoming, all rushed to say hi and make jokes with us, so very friendly and loving. We really enjoyed everyone we spent time with today. CHOP really does have a special staff. It's certainly a perk of all of this--getting to deliver in a brand new facility with big rooms, excellent equipment, a pull out bed for my husband so he can spend nights (it's shocking that this is not a guarantee at most birthing facilities). And I've tasted the cafeteria food there--definitely not bad!

We also met with the lactation consultant who is an internationally-known PhD in breastfeeding science, especially for high risk situations. I actually met her in past work I did in maternal and child health policy studies I did in grad school so it was a bit funny sitting down with her as our provider. I was a bit star-struck. Lucky us!

Anyway, at CHOP they have developed a process of breastfeeding activities to ensure that the baby will get all the benefits of breast milk even though she likely won't be feeding from the breast right away. This process has been published and it's being copied at hospitals around the country. We're working with the best, here, people! Anyway, I will start pumping right away and staff will maintain and label my bottles and number them, and as soon as the baby is able to start drinking herself, they will feed her the bottles in the same order I pumped them so that she'll have a natural progression of breastmilk benefit as she would if she were feeding from the breast. Apparently, even the order of feedings is ordained by nature to provide the best early benefit to the baby--among the first servings of colostrum, there are many antibiotic properties that are meant to be fed to the baby in a particular order. It's pretty amazing. The staff at CHOP also provide support and therapy of sorts until the baby is drinking from the breast herself. We also will do oral care with breast milk, rub the baby's mouth with it so that she gets some of the early benefits even if she can't drink it yet. They even worked with Medela, a breast pump manufacturer, to develop a specific pumping suction pattern more suited to babies who are premature or have some illnesses or health care issues and can't feed from the breast immediately. So I'll get a pattern of pumping that works hard to really get everything it can out of me and get as much breastmilk as possible to Little. Wow, right?

29 Weeks

I have crossed over into my seventh month of pregnancy, deep into the throes of the third trimester. This is when people raise their eyebrows when they ask you questions about when you are due. Aside from a funny feeling that this baby is coming early, at least five people have said the same just from looking at me. Everyone else also chimes in: I'm carrying low. And some seem to suggest that means things are not as far off as they may seem. Who knows. It may be yet another tale, but I'm trying to keep my eye on the prize and move swiftly with preparations.

My husband and I have diligently been getting our home ready. Electrical work, check! Washer-dryer plan figured out, check! And some major painting and carpentry work will be done by the first week of March. If we really get ourselves in high gear (and our budget allows), we'll be ripping out carpet and putting in new flooring in March. But, I'm trying not to get too far ahead of myself here. We'll survive with ugly brown carpeting for a bit longer if need be.

What comes with these 29 weeks? BIGness. ROUNDness. And it comes fast. Like literally I see a friend on Monday and then when I see her by Friday, things have already grown a bit. Soon, I will enter into that 1 pound a week phase. Little may now be on her way to 4 lbs. I'll find out for sure on Thursday at my next ultrasound. We'll also be meeting with the lactation consultant and midwife, and we're taking a tour of the delivery unit at CHOP.

With a belly this big, it feels like I'm just rolling around from place to place. Getting out of bed requires slow movement, and it always feels little painful. Getting out of our living room bucket chairs takes some extra oomph. After my showers or when I get into my pajamas at night, I take a stroll of the house naked to find my husband and say: Look at this! BIG! He smiles and gives me big eyes. And then I shake my booty as if to say, I still got it. Honestly, though, who knows if I still got it. I can't see what "it" looks like anymore!

I can see a few things though: a chubby round face, little hints of stretch marks in tiny, curvy places, swollen feet. All of my shoes feel tight now, though I still just squeeze my feet into them anyway.

The worst of it all though is the carpal tunnel. Apparently, the swelling in your joints can contribute to pregnancy-induced carpal tunnel. I have it bad. My hands fall asleep all through the night and I wake up to them throbbing. Even throughout the day, when my hand is raised holding the bar on the subway, or when I'm walking to work holding a hot beverage--my hand falls asleep. I may resort to wearing a wrist brace before all of this is done to try to deal with the symptoms. I just hope that it goes away after I deliver. I read that normally it does, but in some cases it becomes an ongoing problem. Ugh. Tingling fingers crossed.

Some days I feel like the hunger of a beast that I remember from my first trimester has returned. Other days though, I am satisfied with much less. I assume the current balance will soon sway towards super hungry more of the time.

I'm still working out at the gym, trying to keep a schedule of some kind of physical activity at least 3-4 days a week. I do work out hard when I go to the gym, and the stares I get are difficult to ignore. I always feel on the verge of being fresh with people when they stare, but, alas, it's not worth it. I am clearly the only person who is 7 months pregnant doing kicks on a stepper, so, eh. Yesterday, a woman at the gym said to me: You are doing a good job, I mean it. I laughed, and felt slightly impressed with myself. It's true. It is NOT easy climbing into weight machines and doing leg lifts and the like. I'd say prenatal yoga is some of the hardest activity I'm doing (besides climbing the two flights of stairs at my house, of course) because I'm not naturally flexible though I know flexibility will make delivery a lot easier.

Yesterday, I ran into another pregnant woman at the bagel shop. Ha ha, I know. Bagels for preggers. Shockingly, her due date is one day before mine. We fell instantly into conversation. There really is something about connecting with pregnant women, but something even more intense about connecting with someone who is in the exact same place as you, wondering the same things, dealing with the same changes. Anyway, it was a LOT of fun talking to her for only 10 minutes. She extolled much praise on red raspberry leaf tea which I subsequently ordered online. It apparently has properties (an alkaloid called fragrine) which strengthens the uterus and can shorten labor. My new friend told me it can make labor more intense but shorter. I'm down for that. I did some reading online and I'm on it. My bulk order just shipped!

Last night for the first time, I had a moment of sadness. A pause for reflection about how many things I'm saying goodbye to. I wish I had one more night of senseless dancing at Kung Fu Necktie because that will be that much harder to do with a child. Or one more night of hours pre-partying with my girlfriends. Pre-partying? What is that? What am I partying in preparation for now? Bed! I keep teetering on the verge of writing a mass email to all the women I know begging them to go out dancing with me. Oh boy, think of the stares I'd get then. I'm fine jumping around and getting sassy on the dance floor but I dunno if the general public likes seeing preggers do all that. Hm, I guess I don't care. But it still won't feel the same. Literally.

With all that said, for every moment I grieve my previous life, there are at least 1o full of overwhelming suspense and excitement about meeting our little girl. Every morning when I first feel her move, I say good morning, and I yearn to hold her in my arms. When I open the fridge to make dinner, I kiss my fingers and touch her ultrasound pictures held up by magnets. When I get tired of feeling her kick the heck out of me (btw, she moves all day every day), I wipe away my thoughts and just feel so so so thankful to still have her with me, and elated that I'll have her to hold in such a little while.

She clearly reacts more to her surroundings. Last week when I was babysitting Sydney's baby Grayson, she accidentally kicked my belly. And wouldn't ya know, Little kicked her right back in the same spot! They are already interacting, BFFs-to-be. I love it!

The seven months went by like a breeze. I guess that's what happens when you start counting? I can't believe I'll be 30 weeks in a few days.

I have a hunch that Little has a name. Neither me nor my husband will admit to it, and we'll swear up and down that we're still thinking. Technically, we still are. But favorites are favorites, and the conversation is narrowing. Little won't be Little for much longer. :)

28 Weeks

My belly is now the size that I imagined it would get when I thought of getting pregnant. The fact that it will continue to get bigger amazes me. I often will turn to my husband and say: whoa! look at this! it's huge! baby's BIG! and he alternates between: whoa! that is a big belly! and you still have a long way to go. To which, I sigh, and try to wrap my brain around the concept of getting even bigger. As it is, the belly bands on my clothes don't go all the way to the top anymore. They are sliding downward as I grow quickly outward. My belly button has started revealing it's insides, and, as Ruthie said, it's like your belly button is winking at me!

The baby is now THREE POUNDS! She has grown about a pound in the past two weeks. I'm officially in the third trimester by all existing standards (it's different depending on where you check) so now my email notices are all about actually taking care of a CHILD. Ahhhh! A human! A Little one!

Well, I'm not ready to go there yet, so back to pregnancy.

I've taken to buying only nursing bras at this point so they will last me past April. I now have three that fit, thank goodness, because alternating between two felt sad. My breasts look nothing like they did about seven months ago. And all across my body you can see my blood vessels more and more as my blood volume keeps increasing. I feel like a flesh-colored jelly fish. I started getting skin tags, little tiny ones, on my neck. Syd said they go away after you have the baby. Pregnancy is a whole lot of weird!

Now that I have purchased (and borrowed) hundreds of dollars worth of maternity clothes, I am now committed to keeping any future pregnancies in the winter months. Overall, I'm happy that I'm a third trimester in the winter preggers, but navigating the icy streets and sidewalks when my balance is already so compromised has been frustrating and scary. I slipped on to my butt once, very slowly, but it was enough to turn me right back into my house instead of trekking to the subway for work. I got permission to work from home that day, fortunately, and it was a productive work day for me but it was scary and annoying feeling trapped at home with an icy world out there waiting for me.

My body is now stretching in new, getting ready for superbig belly and delivery kind of ways. There's a pinched stretch I feel going from my pelvis into my thighs that I only really get to fully stretch when I do prenatal yoga on Sundays. My Braxton Hicks contractions started too. The uterus contracts all over to exercise and prepare for labor. I experienced the first one at the gym, and I just froze. It felt very strange, like someone inserted metal armor over my belly. Like the tightest muscle you can consciously feel your body flex, and you have no control over letting it relax. That same morning, I had several BH contractions and I got a bit worried that the baby was coming. But, alas, no. Thank goodness. I hear that I'll just know when they are real contractions. What that means I have no idea, but I have faith that I'll just know like everyone else seems to know.

We put together a baby registry and I've done a lot of reading about what we'll actually need when the baby arrives. I'm not sure I'll know how to use it all, but I'm learning. Sydney lent me the book Baby Bargains which has been a complete godsend. It has reviews and grades of items, and explains how things work, differences between products, and tells you what crap you just won't actually use. Sydney is also always happy to demonstrate! I love it when she's like, Hey, just watch me pump. You'll learn it too. She has outfitted herself into baby carriers and slings for the first time just for the sake of my curiosity. I love it! I want to dress her in all of her slings and carriers and take pictures.

We are starting a big painting project in our house very shortly, as soon as we get the new stacked washer and dryer installed on our second floor. The baby's room will be a very light, sweet pea of a color called Everlasting Peach. I love the name of the color even.

And now to the star of the show...Little. I went to my biweekly ultrasound at CHOP yesterday. The baby looks great! Now that her diaphragm is more fully developed, they are more able to see that the cyst in her chest does herniate the diaphragm at its esophageal aperture (hole that the esophagus goes through to meet up with the stomach). They are not concerned because it's still just following the esophagus and it has no effect on her lower organs. They explained that diaphragms develop via flaps that grow toward the middle of the abdomen from the sides of fetuses bodies. I'm getting a lot more detailed lessons about fetus anatomy than I had expected! Once again, the docs and nurses crowded around the sonogram screen (they also have one mounted to the ceiling that I get to watch all for myself) and checked out Little. I met a new doctor, and he said that he's learning from our baby. He reiterated that while they've seen everything it seems at CHOP, they haven't seen this before. He said that they were happy that she is keeping things interesting but not too interesting. My husband and I are happy that docs and nurses are learning from her, we like watching the learning process, and we like the idea of contributing to better care for other babies in the future. They said she looks very healthy, and everything is just great. I'm starting to picture myself holding her. I already feel such intense love for her, it's hard to imagine what that will feel like when I'm actually holding her. I cannot wait. Well, I can, but not tooooo long.

Oh yes, and she's a Year of the Rabbit baby. I bet she heard or felt the Chinese New Year fireworks from our bedroom the other night because she went into overdrive overnight and kept me awake for hours.

Little, in all her Beauty

Here she is at 2 lbs (26 Weeks). Love!



In the second photo, she had just finished a BIG yawn.



She is literally perfect. Even better than perfection.

25 Weeks

Well, I've been taking a little break to just stare at my belly in awe. It popped. I mean, I know I said it already popped but it seriously popped. My belly button, while still clinging to its "innie" status, looks deformed and stretched. The linea negra goes almost up to my breasts. I feel growing pains somewhere across the vast landscape of abdomen at least daily, and it's a feeling like a dull pulsing of muscles that have never known they could stretch so much.

But the size of my belly is barely the half of it. The baby is only 2 pounds but I've gained over 20! It's megacurves for my new body and I'm already itching to work it all off. In the meantime, though, I eat. Not as much as I ate in the first trimester, but still I'm hungrier than I was on a normal day more than 6 months ago.

And, my body feels a bit like a perpetual Leaning Tower of Pisa, teetering and tottering up stairs, around corners, and across slippery ice. When I take a turn too fast, I feel like a skidding car up on just two wheels, ready to topple over. When I bend down in a certain way, or sit flat on the floor, it takes some strategic moves to get back up.

My hormonal state amazes me. I have always been a little bit anxious, my parents are quite skilled at the art of calming me down. But now, I don't feel anxious, I just feel plain crazy. My patience lives barely as long as a lit match. I pity all customer service personnel who have had to interact with me in the last couple months. I'm very quick to explode, and when I get back down to Earth, I feel almost like I went unconscious. My husband has now learned the art of calming the beast. Lucky guy. Oh yes, and the crying. Crying when I can't figure out my new cell phone, crying when I get frustrated about missing the UPS guy, crying when I burn the bottom of the pan. You know, some more out-of-body and out-of-mind moments that I awake from, dazed. I can't wait until I'm on the other side, though I hear the emotions will keep on flowing after the babe arrives. And the pregnancy brain is in full effect. Yesterday, at my prenatal care appointment, I walked into the restroom with a pee cup, and, instead of properly collecting my urine sample, I relieved myself right into the toilet with a big, long sigh, staring confused at the cup in my hand. Yep, Amanda, that was a pee cup. Supposed to pee in it. So I managed to push a few drops into it, walked back to the midwife, and apologized. Luckily, she had all the sample she needed.

It's nice to be really, really showing. While there is always a plethora of strangers to interact with (and avoid), I feel like it makes more sense now when I bug servers with a million questions about pasteurization and meat preparation, or get up at awkward times during the meal to relieve myself. Oh the peeing, it's a new feeling, when I have to pee now. I can literally fully go, get up and roll back up my pants, adjust my long shirt, shake everything back into place, and then have to go again by the time I get to the sink. Clearly, the babe is pushing on the goods because if I bend in a certain way or walk up steps built at a particular grade, I gotta go. I did a step class at the gym last Saturday morning, and peed four times during the hour class. Clearly two risers equals Little bumps into the bladder. I have to pee RIGHT before I leave my house in the morning because by the time I walk to the subway station and board the train, I have to go again. Fortunately, from there, it's only about 15 minutes until I reach a toilet. And, those hefty laughs or deep sneezes, might create a little leakage. I have to carry extra pairs of underwear with me at all times. Nothing like losing a drop in your panties to feel like you aren't just growing a baby, you're turning into one. Oh boy, I am being too honest now.

Might as well ride that wave.

Two weeks ago, we went for an ultrasound at the original hospital where we were going to deliver. The sonographer stared so goshdarn confused at the image, and she had a perpetual frown on her face, a look of pity that she would throw my direction every few minutes. Hm. Then the doc got me all in a tiff, talking about sticking needles into my belly, doing an amniocentesis (for what purpose at this point, I never figured out), creating visions of having to medevac me from CHOP so I could get some adult care in case I have complications during delivery. While ultimately the message was: baby is totally OK, there were enough questions and concerns and stern faces to send me back to a few weeks ago.

But then, yesterday, we went back to CHOP. And we got the thumbs up to never have to go anywhere else. Thank goodness. Everyone at CHOP looks confused at the screen too, don't get me wrong, but it's in that curious, we're gonna figure this out and get it to work for this family kind of way. Not in a "we pity you" way. They talk a lot about what they see, they talk to each other openly in front of us, they ask questions of each other. They are true intellectuals, scientists, and they are confident in their abilities to work with a situation the likes of which is new to them. Because even though most of them (maybe all) have never seen an esophageal duplication cyst before, they have seen plenty, and they've conquered plenty, including the impossible, and from what they know, they've got this in the bag. They print out book chapters and make copies for us, and they do everything in a team format, so there's never just one jerk with an ego making a poor decision. Some docs operate that way, but not these folks. We are very lucky. And they told us that all the scary things we were hearing two weeks ago from the other folks just didn't have to be. They are honest about what they don't know yet, but they speak with a lot of confidence about monitoring Little's growth and making smart decisions at the right time. No getting all into a panic.

And that feels right, I tell ya, because Little feels very healthy to me! She moves all day pretty much every day. She has routines. She reacts to what I eat. When we watch her on ultrasound, we see her yawn, hiccup, and stretch out her arms and legs. She's a little normal babe doing her thing. So when the medical folks ask me "what's wrong with the baby" or use the term "abnormality" and "birth defects" I feel a bit confused. She feels normal to me, not that I have ever been pregnant before, but nothing feels like she's in distress or slowed. Little feels like a normal bebe to me! I watch Syd's little lady Gray and I feel like it looks how it feels, minus a few months of development. Less intention, but plenty of reacting!

Yesterday, they gave us a tour of the NICU. It was difficult for both of us, but overall good. The little ones are surrounded by machines larger than they'll grow in the next 10 years. Some of them are in little glass cocoons, under fluorescent bulbs, wearing knit hats that are shorter than my index finger. But the unit still has its pleasures. There are pretty paint colors, stars on the walls, two big recliner chairs next to every baby's bed for parents and visitors. Their names are in foam letters, stuck to their metal cribs or plastic bassinets. While we saw plenty of exhausted parents there, one nursing, one sleeping, some of the babies weren't attended by parents. I understand that parents need a moment to live life, eat, sleep, but it was heartbreaking to see babies sleeping or fussing without a parent in attendance. Granted, our tour was at the late lunch hour and there were folks in the waiting area. But if the hospital doesn't watch me, I may end up trying to bring home more than one baby. It resulted in another unanticipated conversation--how will we attend to the baby after she's born and still take care of ourselves. We can't really answer that question until we figure out exactly what will happen, like how soon she'll undergo surgery or what her condition will be when she's born, but it's giving us another thing to try to think through. Every baby can only have two visitors at a time (including parents), so we'll have to parcel out our guests and move two by two. It'll make for different introductions than we might have expected, but as long as Little can feel the love of her extended family, it'll be just fine.

The delivery rooms at CHOP have windows in the wall, which is literally a passthrough for the infant once she's born, into the adjacent infant emergency testing/care room. Once she's born, I probably will get almost no time to bond with her--she'll go through the little window in the wall and they'll check her breathing, her heart health, and her ability to swallow. Lucky for us, the room is set up this way, we'll at least still get to watch her and be in the same room with her. I've heard stories where folks see their babies disappear.

The hospital does what it can to make our time with them as comfortable as possible. There's a kitchen in the NICU, a roomy waiting room, and down the hall a library with wireless access, computers, books, and tvs to watch movies on. They want folks to be comfortable, and to be able to take breaks and feel normal. It was nice to see.

At the end of our visit, we met with our new midwife. She was really awesome. She was honest about what to expect but gave me plenty of hope that they'll do everything they can to abide by what I've wanted for the birth all along--natural, no drugs, lots of movement, and the support of my husband. They'll have to monitor me during all of labor, but I won't have to wear an outdated monitor that keeps me wired to a machine, I'll be wearing a high-tech device that I can move around the room in, wireless, and that will even keep working fine if I want to take a shower during labor. She's coordinating plenty for us: tours of different units in the hospital, a meeting with an anesthesiologist, meetings with lactation consultants, and time with a social worker to get even more details in place and ready for delivery day.

Right now, Little's heart sounds great, she is swallowing just fine, and she's growing at the right rate.

I feel like we are in excellent hands. I said to my husband that I already feel bad for baby #2. He or she won't get nearly the expert attention that Little is getting. Lucky lady--she's so worth it. I can see it in the 3D ultrasounds (we got new ones too!), she's showing her gratitude in the most plain of ways: long yawns, fawning arm positions. She feels loved. She really is.