The Memory of Little Feet

 

C & S’s little feet, August 2014

The “lucky” pregnancy mug/ planter in my hospital room.

The “lucky” pregnancy mug/ planter one year later. (Now a vase, as I accidentally killed the plant.)

I’ve always been dismayed at those bloggers who invite you into the most personal moments of their lives, and then suddenly disappear without a word. So rude! So abrupt! So unsettling. And after letting more than a year lapse since my last post, I became one of them.

I’m so sorry!

It was never my intention. I’ve started writing so many posts in my head, but life has been one big glorious, messy, chaotic interruption. I left my job when I went on bedrest at the hospital, so I no longer even have those moments to steal away for a few tweets or updates.

I’m hoping this time I’ll get to hit “publish” and give you all the long over-due update about what happened after we escaped from the NICU and brought C & S home.

It’s all been so much harder and so much easier than I expected. Easier because C & S are the sweetest babies with such sunny temperaments. Easier because they continue to “graduate” from their specialists, with clean bills of health. Easier because big sister loves them like no others. Harder because big sister at age three is a tough one. Harder because after surviving infertility, five weeks of hospital bedrest and two months in the NICU, there’s the joy and burden of Appreciating Every Single Miraculous Moment.

Sometimes when my three-year old is having a tantrum and screaming so loud that the walls are trembling and her sisters start crying in alarm, or she needs help going to the potty just as I’ve buckled all three girls into their car seats, I marvel how much I went through for the privilege of being in this moment, of being a mother of three who all need me so much. I’d do it all again just to be in this unpleasant moment of wiping poop while everyone is crying.

Though to be honest, in these particular moments I want to tell them, “Hey kids- I’ve already gone through hell and back to have you here, can’t you just give mommy a break now?”

Of course, for each of those moments, there are other moments that make my heart explode with joy: hearing the girls laughing together as big sister pulls a blanket across the floor with her little sisters running to catch her and go for a ride. The twins feeding each other cheese and Cheerios across their high chairs. The girls all dancing together and clapping as the littlest sister learns to twirl. The twins giving each other kisses, waking up from their naps talking in their own little language.

I watch them and marvel that C and S were frozen in a dish for over two years. That they were born at 29 weeks and 6 days, weighing just 3.5 and 2.7 pounds, spending the next two months in a warm little box until they were strong enough to come home. That my determined little C almost didn’t make it that night she was born.

During those days in the NICU, I consoled myself with the thought that my babies would never remember spending their first two months of life in a hospital. That they wouldn’t remember being on morphine, needing breathing support and IVs. Being too fragile for even their mama to hold them until they were three days old. That they wouldn’t remember the pain, pokes and pricks and procedures. Then someone told me that preemies feet “remember.” They are more sensitive to touch, as their tiny feet were used as the point of blood draws and IVs.

The days leading up to the twins’ first birthday this year were so difficult- I couldn’t help but relive each day from July 10th when I went to the hospital to their birthday on August 12th with dread. The details I wanted to forget were still there; how it felt to prepare again and again for their premature birth and the possibility that they might not be strong enough to survive. Fearing I might not be strong enough to survive if they did not. The dire predictions and statistics from the neonatologists who reminded me that even if my babies survived, they could have severe cognitive impairments.

I kept their birthday simple. Just a small family dinner and cake. We sang to each of them, and then let them have the little smash cakes I made. They dove into those cakes with such delight, devouring the whipped cream frosting and giggling with glee as they smeared it all over their faces and trays.

I still smile to think of it. As they smashed those cakes, they replaced my traumatic memories of their birth day with the happy memories of this first birthday.

C and S are 15 months old  now. They still have appointments with the pediatric development team every four months to assess their motor skills, language and cognitive development. They are meeting the appropriate developmental milestones for both their adjusted and actual ages. Their pediatrician said that if it weren’t for their diminutive statures (S is only 16 pounds and C is 18 at 15 months) he’d never even know they were preemies. Their lungs are clear, their vision is fine. Their PDA’s and PFO’s (holes in their hearts, normal for preemies) have closed.

And my heart is healing too. I tickle the twins’ feet now and they giggle. Whatever memories may be in their little feet, they can’t be all bad.

This may be the end of my blog, so I’ll say goodbye for now. Thank you for supporting me through so many difficult, scary days. I wouldn’t have made it through with my sanity (somewhat) intact without you. Your stories and encouragement will be part of me forever. You’ve made a difference in my life, more than you could know.  

With so much gratitude- Jess

The same tubby one year later. September 2014 and September 2015.

 

 

Home at Last

Sylvia and Carina’s first home: their room in the NICU.

Last week was my due date. I can’t help but wonder what today would have been like if my babies had stayed where they belonged. I would have been gloriously uncomfortably pregnant leading up to their birth. I would have wistfully said good-bye to pregnancy forever. And I would have been able to hold my babies on their birth day, breathing in their brand-new baby smell, counting their tiny fingers and toes, kissing their round cheeks.

That wasn’t how it happened, but I still feel like the luckiest mother in the world. Sweet little Sylvia and Carina are ten weeks old, born ten weeks early. But they are here, and healthy. And they are finally HOME!

I started writing this post two weeks ago but haven’t had a moment since to finish it. Carina came home on September 29th, quickly acing all her NICU exams and surprising us all by how quickly she was ready to go, especially after her rocky start. The day before, T and I frantically raced around the house getting everything ready and trying to find space in our tiny two bedroom condo for two babies.

At the NICU, the nurses pulled off all Carina’s probes and handed her to us. It felt amazing and strange to hold my daughter for the first time without wires. We packed up her half of the room, and buckled her into her car seat. It all felt very surreal.

Our littlest daughter was sleeping soundly in her industrial NICU bed when we left. I kissed her goodbye and started to cry. It felt wrong to be taking her twin home and leaving her behind, so tiny and lonely in that big cold bed. All the raw emotions from leaving my babies behind in the NICU the first day coming back to the surface.

Once we got home, I felt better. Estella was delighted to have one of her baby sisters at home. She insisted that Carina get bedtime stories with her, and that Carina sleep in her room. And then she said she wanted to go back to the hospital and “bring the other one home too.”

Over the next two and a half weeks, we juggled twins in two places, carting Carina back and forth to the hospital to visit Sylvia and pleading with Sylvia to take her feedings so we could take her home. Carina was not pleased to be back in the hospital; my easy-going baby would cry every time I put her down in the NICU bed. I would kangaroo with them both together as often as possible. Sylvie loved this most of all- reaching her arm over her sister in a hug one day as I held them together.

At home, I would call the NICU night nurse on duty when I was up with Carina in the middle of the night, checking in to see how Sylvie was doing. The hospital had moved Sylvie out of her delux twin room to a smaller single baby room, with a whole new set of nurses. So now when I called to talk to the nurse at night, most of the time I was talking to a stranger, someone I had never met who had the job of taking care of my littlest baby. I’d tell them to be patient with her, that she was a slow eater but that she could finish a bottle if they stuck with her.

I could tell that some of the nurses took my pep talk to heart and did their best to get Sylvie to eat. But others were eager to get me off the phone so they could just turn on the tube feeding instead of bothering with bottle feeding my slow-poke eater.

Until Sylvie could take 75% of her feedings by bottle, she wouldn’t be able to come home. So the days clicked away, and it seemed Sylvie would never be able to come home.

Finally, last Wednesday morning, Sylvia’s NICU doctor called. She’s the one who was there the night the girls were born. The one who saved Carina’s life.

“What do you think about taking home Sylvia today?” she asked. “I know it’s sudden, so if you aren’t ready, no problem. But I think she will do well at home.”

“YES!” Yes, I wanted to take my baby home!

I called T at work to give him the amazing news, and we made arrangements to meet at the hospital at the end of the day so we could all leave the NICU together as a family.

As I drove over the bridge to the hospital one last time (at least until all the follow-up appointments) I exhaled a giant sigh of relief. We had made it through to the other side. After so many months of anxiety and uncertainty, both my babies would be home. They were going to be ok.

We packed up Sylvia’s room and at the urging of our nurse, took a “Victory Parade” around the NICU to say goodbye to everyone. I tearfully hugged my favorite nurses goodbye, overwhelmed with gratitude.

As I stood in the lobby of the hospital, waiting for T to bring the car around, a woman came over, curious about the double stroller and its occupants.

“Oh look at them!” She exclaimed. “Twins?”

I nodded and smiled.

“How old are they?”

The question stumped me for a moment. I didn’t want to explain it all. Everything I’d been through. Everything they had been through. My babies were nine weeks old, but they were also 39 weeks old. Not even to their due date yet.

I gave her the short explanation.

“Oh, so they must have been really tiny when they were born,” she commented. “How much did they weigh?”

Her question, well-meaning if nosey, pierced my heart, as I recalled how small and fragile my two and three-pound newborn babies were. How close I came to loosing them.

I tried to answer her, but started to cry.

“Very, very small.” I managed to say.

T came around with the car and we headed home, stealing glances at our beautiful babies in the back seat, marveling at how lucky we were.

In the days since then, that sense of wonder hasn’t waned. Even with the sleepless nights, waking up to feed two babies every three to four hours, I hold the girls close and whisper to their sweet baby heads how loved they are, how grateful I am that they are with us.

I had left journals in the twins’ room for the nurses to sign, so the girls will have messages from those amazing people who cared for them during their first months of life, and a glimpse into what those days were like. I was touched by their words, and especially the nurses’ observations of me and T:

Sweet Carina,

I had the pleasure of caring for you your first day in the NICU. You came into this world with a bang and gave your mommy and Daddy quite the scare. They were brave and strong and bursting with love for you…

Dear Sylvia,

I never had the pleasure of caring for you, but I got to show your mommy and daddy around the NICU before you were born. I talked with your mommy and daddy a long time about what to expect after you were born. They were so scared, but it was obvious their love for you no matter what happened. I’m sure you will fill their life with joy…

They already have. So grateful.

Home at last.

 

 

Homecoming- Still Crossing the Bridge

The bridge from home to the hospital. 

Every time I drive over the bridge to the hospital , I flash back to that terrible night on July 10th when T and I first made the trip there. Checking in at 25 weeks, answering “October 22nd” when the charge nurse asked my due date- a date that seemed so impossibly far away. Hearing the worst-case scenarios from the neonatologist and MFM teams. And then the five harrowing weeks of hospital bedrest that followed, each day wondering if that was the day my babies would be born too early.

Then my daughters’ terrifying birthday on August 12th. Meeting Carina for the first time, holding her tiny hand in mine and hearing from the doctors that this might also be a good-bye. That I should prepare for the worst.

Leaving the hospital for the first time, the heartbreak of coming home without my babies. All the days driving back and forth over that bridge since then to visit them. Each night going back across the river, leaving them behind again and again.

It all has taken a toll.

But my tiny girls are amazing. And tomorrow, at 36 weeks and 5 days, against all the odds, Carina is scheduled to come home. She had her feeding tube removed and has been taking all her feedings by mouth. She’s passed her car seat test. She hasn’t had any destats or bradys (heart rate or breathing episodes) for over a week.

The hard part is that tiny Sylvie isn’t ready yet. She’s healthy and growing and alert, but she’s not interested in nursing or bottle feeding yet. She’d rather snuggle into my arms and sleep, or look around the room with her wide eyes, taking it all in. The bottle or the breast just getting in the way of her view.

I had dreamed of a joyful and triumphant homecoming with both my babies, but instead I’ll be leaving Sylvia behind again- all those feelings I had leaving her the first day home coming back again.

So it’s a beautiful terrible mix of emotions. The joy of welcoming home the daughter I feared I might have lost. Showing her the world outside the hospital. Tomorrow night I’ll get to snuggle her whenever I want, without having to ask permission from the nurse. But our family still won’t be together.

Hopefully her sister will follow soon. And maybe one day I’ll drive over the bridge with my three daughters singing and cooing and talking in the back seat, and the old terrifying memories won’t engulf me. Instead I’ll think about how strong we all were to get through this. How happy the days have been since then.

And how grateful I am to be on the other side.

 

 

 

 

 

Progress in the NICU

Taking on the big world together.

The girls have been proclaimed adorable by their nurses and “boring” by their doctor which is as good as it gets in the NICU. Both girls are off all oxygen and respiratory support systems, and now only have the feeding tube as the last thing to vanquish before they can come home.

Each time a piece of support equipment is removed from the room- oxygen and nitric oxide tanks, the CPAP breathing support with the tanks of bubbling water, the jaundice lights, the IV rack, the high flow canula- I relax a little bit more. The monitoring machines in the room no longer beep angrily and urgently every few minutes. If I dare say so, it’s actually peaceful and calm in their room now.

They had their eye exam last week for ROP (Retinopathy of prematurity) a condition that causes vision problems in preemies. (ROP is the reason Stevie Wonder was blind.) The doctors use a tool like metal pliers  to keep the babies’ eyes open- ugh. Other NICU moms recommended that I leave the room for the exam since it’s so tough to watch. I took their advice, reminding myself that the babies won’t remember these traumatic days but I will- and I should spare myself these bad memories if possible. The nurse came out less than ten minutes later, letting me know the girls were done and had hardly complained. And the good news that the exam came back normal. Another sigh of relief for mama.

The girls are so much happier now. When they were first born, they were so very angry, screaming until their faces turned red and then blue as they tried to pull off their CPAP masks, pulling on the wires. It was scary and heartbreaking to see. Their early arrival to the world had been a cruel one with so many needles and pokes and prods, bright lights and loud alarms. Now they smile in their sleep, only being awakened for their diaper changes and to try and convince them to nurse.

After weeks of sleeping in their separate isolettes, they also get more time together now, taking their first bath together and snuggling together in the same bed occasionally. We put them side by side after their first bath, and they reached up and grabbed hold of each others’ hands. As if to say, it’s a big world out there, but I have my twin and we are in it together. I love seeing them together.

Hopefully it won’t be too much longer before I can see them together every day- and not have to drive to the hospital to see them.

It’s been a long road.

 

 

 

The Summer That Wasn’t

A double armful of love- with my August instead of October babies.

It’s the unofficial end of summer, and it feels like summer never happened to me at all. Spending the first five weeks at the hospital on bed-rest, and then going back and forth to the NICU for the past three weeks, my memories of summer of 2014 will be linked forever to the smell of sterile hospital rooms and hand-sanitizer, the sound of beeping of monitors and the feeling constant anxiety.

The anxiety is lifting a bit now. Carina and Sylvia are doing amazingly well, especially considering Carina’s terrifying start and the dire words from “Dr. Doom” on their second day who unhelpfully said that the girls “aren’t doing as well as he’d expect for their gestational age.” He filled our heads with all kinds of worries, so much so that T and I stopped asking him questions and would try and avoid seeing him as much as possible.

The nurses and doctors since then have all been impressed with the girls’ progress and hopeful about their future. Even as tiny as she is, Sylvie hasn’t needed the dreadful CPAP for a while now. Carina graduated from the CPAP last week, and now is on just a “whiff” air pressure from the high flow canula. Dr. Amazing, who saved Carina’s life the night she was born, told us today that she expects Carina would come off the canula in the next day. The IVs are out now too, so both girls will only have the feeding tube until they are bottle and breast feeding 70 percent of their calories. They already are over their birth weights; Sylvie is closing in on 3 pounds and her big sister is almost at 4 pounds.

Being able to see the girls’ sweet faces without the CPAP gear makes such a difference. T and I finally feel like we are getting to know them, to see their expressions and features as we never could with their heads covered with the CPAP hats and tubes. The girls are happier and sleeping better now that they don’t have all the tubes in their noses and gear on their heads too.

With the CPAP gear off, we were also able to give the twins their first baths. They both loved it, relaxing into the bath water as if it were the home they should still be in at only 32 weeks.

And best of all, we now can hold both girls together. The moment I first held both Sylvie and Carina in my arms together, my heart filled with such love and relief, seeing their little heads side by side. Carina slept soundly as usual, while Sylvie reached out for her sister and inched closer to her just as she had in the womb. For the first time, it finally felt real that I was the mother of twins.

We still have a long way to go before they can come home, but knowing that they WILL come home is all that matters. When I worry, T reminds me how far we’ve all come- and how tough our girls are. Once again it’s just one day at a time.

 

Adjusting to NICU Life

Mama love.

It’s been nine days since the girls were born but it feels like several lifetimes. Physically I’m feeling well, considering five weeks of bedrest followed by the c-section surgery. But emotionally, I’m still reeling from the girls’ sudden and traumatic birth.

T and I run back and forth to the hospital, trying to be there for all the c-Pap changes (the one time a day we can see their sweet faces under all the headgear that helps them breathe) and trying to fit in all the “Kangaroo Care” snuggle time that we can get.

Then we come home, and it seems surreal that life goes on despite the fact that we have two daughters at the hospital. Sometimes I still put my hands on my tummy, forgetting that my babies now are doing their kicking and growing at the hospital three miles across town.

Big sister E visits them too, bringing books to read to them and making up little songs about Sylvia and Carina. She tells me she wants them to come home, and I blink back tears and tell her that I want them to come home too, but they have to get bigger and stronger first.

Often we see other families leaving the hospital with their newborns, loaded down with balloons and flowers. I’m jealous of them- and I’m sad for Sylvie and Carina that their arrival wasn’t heralded with pure joyful congratulations and balloons, but instead with fear and worry from those who love them best. It took us a week before we even started telling friends and family (other than our parents) that they had arrived.

But I can’t feel sorry for myself or for them for too long when I see the determination of my daughters to keep breathing and growing. Every day I’m inspired by their strength. Watching their feisty little spirits as they kick and pull on their CPAP masks, putting up a fight when they want to make their voices heard.

And despite “Dr. Doom’s” prognosis on their second day of life, both girls continue to make steady progress. Sylvie came off oxygen first, just a few days after birth. Carina needed the ventilator for the first day, but then graduated to the CPAP (which is less invasive and just applies a gentle pressure to help them inflate their lungs). She was soon off the supplemental oxygen too. The doctors had talked about taking Sylvie off the CPAP this week, but decided to bump her back up to a 5 instead of 4 and give her more time to focus on growing and gaining weight instead of working too hard to breathe.

Both girls are tolerating their feedings well (breastmilk by feeding tube along with an IV for supplemental lipids and nutrition) and are almost back to their birth weights.

So all good news so far, which is a rare thing on the NICU rollercoaster, and especially given Carina’s scary start which I try not to dwell on.

Last time I posted, I promised pictures. Here are the girls at one week old, without all their CPAP breathing gear. Both are less than three pounds. Though tiny, they are such bundles of strength, sweetness and determination.

Carina Eleanor

Sylvia Grace

 

 

 

 

 

 

 

 

 

 

 

 

Thank you all for your positive thoughts, wishes and prayers over the past month and a half. You have helped me find strength I didn’t think I had when I needed it most. I’ll continue to keep you updated about the girls you’ve helped so much- at least until they are safely home.

Our Preemie Twins’ Birthday

Tuesday, August 12th started like most good boring days of bed rest should. Early morning vitals and monitoring, horrible hospital breakfast, “Non-stress test” for an hour where both babies heartbeats looked perfect, within range and with good accelerations and deceleration. I had my usual bi-weekly ultrasound scheduled for 1pm, and the hospital transport was 40 minutes late coming to pick me up. I hadn’t had time for lunch before I thought they would arrive, so I was grumpy and hungry.

In the ultrasound, the technician looked at Baby A first. Not surprisingly, Baby A’s fluid levels were low. I had been loosing more fluid than bleeding over the past two weeks. The doctors though this was preferable to bleeding, explaining that the babies didn’t need as much fluid later in the pregnancy anyway. So I wasn’t too concerned. Baby A also didn’t do her practice breathing- which I understood was normal not to do it every time. She and Baby B rarely both got scores for breathing on the same day, and I was certain I had felt Baby A hiccuping just before the ultrasound (hiccups also count for the breathing score.) But all this meant that Baby A got a score of 4/8 while her sister was 8/8 for the biophysical.

Transport wheeled me back to my room, and I finally ordered lunch and ate at 4pm. The nurse came in and said the doctors saw Baby A’s scores, and wanted me back on the monitors to do another Non-stress test. I was annoyed. If they were worried about the biophysical ultrasound, it seemed like the doctor on call should at least talk to me about the results.

On the monitor, Baby A’s heartbeat looked high, staying around 170 and up, occasionally dropping down to the high 160’s. The TOCO monitor also showed contractions every four minutes, though I wasn’t feeling anything other than what I thought was indigestion from my late lunch.

I’m now so grateful that the doctor on call thought otherwise. Orders were sent down for me to be transferred to Labor and Delivery. I was upset. None of this seemed cause for alarm- and I knew what the routine would be in Labor and Delivery: Magnesium, hooked to the NST monitoring and an IV all night, lots of people coming in and out of the room, and no sleep.

 

It was 5pm. I told T to come to the hospital.

“Hurry” I added.

T, said later that he knew when I said to hurry, that this was serious.

He left his office and flagged down a cab. Stuck in traffic on the short drive to the hospital, he told the cab driver to do whatever she could to get him to the hospital as fast as possible, explaining our story. Sometimes life is stranger than fiction; the cab driver who picked T up was born prematurely at 30 weeks herself at another hospital in town. With a twin sister who didn’t survive. She refused to take T’s payment for the cab ride, but gave him her card asking T to let her know how things turned out.

When T arrived, I was deep into the magnesium haze, begging for water or ice. I wasn’t allowed anything. The nurses gave me some oxygen to slow my heart-rate, but soon I was vomiting, and then my temperature spiked as I started shivering uncontrollably, my whole body writhing in pain with how cold I felt. I heard the nurses saying the babies’ heartbeats were high. Through my haze, the doctor calmly told me that I had a serious infection from Baby A’s water breaking, and that we needed to have an immediate c-section to the babies out.

I cried, but agreed. I knew I could no longer keep the babies safe inside. I could only hope they were ready.

T called my parents, 3,000 miles away, to let them know what was happening. “Remember to be excited,” my mother said. “This is your babies’ birthday!” Her optimism was just what I needed to hear.

By 7pm, the nurses were wheeling me into the operating room. I clung to T’s hand, pressing it to my face, the only bit of warmth I could feel as my body continued to shudder uncontrollably from severe chills.

It was even colder in the operating room. With all the strength I had left, I willed myself to stop shaking long enough for the anesthesiologist to inject the spinal pain blocker.

I felt the pressure of the incision, and at 7:33 pm, they announced that Baby A was out. My heart fell as I strained to hear her cry. No sound at all. They whisked her into the recovery room and I felt another weight being lifted out of me as her sister was delivered two minutes later at 7:35 pm. Again, no cry and she was whisked away, not even a moment to spare for me to see her. I told T to go with the girls, where he was allowed to watch them in the recovery room.

Meanwhile, I was shivering even more violently as the surgeon was still trying to remove the placentas. The doctor later told me that did his best to stay calm, but he was very worried as my vital signs were failing and my blood pressure was dangerously low. They were placing another IV, trying to stabilize me, promising me a warm blanket as soon as they could get the second IV in. Even with the warm blanket, I was so cold, my body so stiff.

The first placenta came out easily, but I heard the surgeon say that the other placenta wasn’t budging. I assumed this must be the previa placenta, which has a risk of being a placenta accreta. This means it grows into the uterus which was very dangerous and would need an emergency hysterecomy. Another worst case scenario seemed to be coming true. Later I learned it was Baby B’s placenta that was just wedged in at an odd angle, and they got it out.

From here, it was a haze. I don’t remember them stitching me back up, only vaguely remember them rolling me back to my L&D room. The warmth gradually started to return to my body. They wheeled in Baby B so I could see her. She was so tiny and beautiful, and seemed calm despite what she had just been through. They assured me she was doing well. They told me that she was smaller than her sister, just 2 pounds 7.5 ounces while her sister with the compromised placenta and amniotic sack was surprisingly much bigger at 3 pounds 5.6 ounces.

I was afraid to ask where my other baby girl was. T came in from the baby recovery room. Looking at his face I knew it wasn’t good news. He told me she was fighting hard, but she was struggling. He bowed his head so I wouldn’t see how scared he was, but he was crying.

“Go be with them,” I told him. I felt numb. This couldn’t be happening.

I will always be so grateful for my nurses who took things into their own hands and decided I needed to see my baby girl. As soon as they confirmed I was stable, they wheeled my hospital bed down the hall and up to the NICU. It looked like a party in our room- a huge crowd of people and all the lights on. Everyone surrounding the isolette where my daughter was. I overheard the doctor telling my husband that they had tried all the ventilators, that she was refusing them all, that she wasn’t breathing on her own or taking in the oxygen she needed with the support. The last resort was to administer nitrogen oxide, something they didn’t usually use on preemies, due to the risks of bleeding. It was a “Hail Mary” approach at this point. I’ve never seen T look so shaken.

My nurses wheeled my bed in right next to my daughter’s isolette. I expected to see her lying there, limp and motionless. To my surprise, she was kicking her feet and waving her hands around. My husband was right- she might be struggling, but she was fighting hard. The nurses opened the door of her isolette and encouraged me to reach in and touch her, to talk to her.

It hit me that this might be the only time I would see her, the first and last time I might hold her hand. Tears streaming down my face, I reached in and stroked her tiny arm gently, holding her little hand and told her how much her daddy and I loved her. How she had a wonderful big sister who couldn’t wait to meet her. How much her little twin sister needed her. How loved she was. How she had to hang in there, that we all needed her. T came over and we held each other and cried.

“I’m so proud of her- she’s fighting so hard,” he said through his tears.

The nurses took me back down to my room, leaving T behind with our daughters. I was dazed and exhausted. I started to pump milk, getting only a few drops, every few hours, but feeling good that there was still something I could do for them. Each time I dozed off I’d wake with a start when I heard the door open, afraid someone was coming in with the news I feared to hear. T came back to let me know that the doctors were able to place the ventilator. He was going to sleep in the NICU room with the babies, and he’d let me know if anything changed.

When T came in the next morning, I could see the exhaustion in his face, but it was mixed with relief. He brought me across the hall to the NICU to see our tiny babies. Our tough little girl had made it through the night and was holding steady on the ventilator. The NICU doctor was standing by her isolette, explaining that they were already starting to turn down the nitric oxide and supplemental oxygen. That if all continued to go well, our tough baby girl would soon be exubated and moved to the less invasive CPAP instead, which just exerted gentle air pressure to make breathing easier.

Our youngest daughter was continuing to do well, sleeping as peacefully as she had the night before, letting her twin get all the attention she needed.

We began to let ourselves relax a little bit. We marveled over their tiny toes and fingers. Their matching dark hair. Most of all, their incredible determination to be here.

Yesterday we finally decided on names, choosing middle names from each of our families and first names that were all their own.

I’m so grateful to be able to introduce them to you all: Sylvia Grace (Sylvie, meaning from the woods in Latin) and Carina Eleanor (Carina meaning dear little one in Italian.) Grace after my great-grandmother and for all the grace she had coming into the world so early but so calmly, allowing her sister to get all the attention she needed in those critical hours. And Eleanor for T’s grandmother who died when he was very young, who was always said to be his guardian angel.

The nurses in the NICU already have commented what little personalities they are. That Sylvie is the talker and Carina is the active one. We held them today for “Kangaroo” time- the girls were calm and seemed happy snuggling in warm and cozy against us. All the wires seemed to disappear for that moment, and T and I finally were just parents holding our babies. It felt wonderful.

I get to go home today. It seems surreal, that I’ll be home for the first time since July 10th, sleeping in my bed with T, playing with E and walking around without the constant worry of my difficult pregnancy. My bed rest marathon is over, but we are just beginning the NICU marathon. Our girls as well as T and I need to stay tough, and once again, take it just one day at a time.

While I still wish I could have protected them for longer, our little Carina Eleanor knew that she and her sister needed to come out that day. I also wish this was the end of our story; that I could wrap it up here with a happy bow. But as the doctors like to remind us, there are no guarantees in the NICU.

Thanks to you all for your love and support through all these chapters; through the long struggle with infertility to my hospital bed rest pregnancy and now the NICU. I’ll continue to share updates here about Sylvia and Carina. And hopefully one day, the happy ending to our story.

PS: For everyone who is hoping to see a photo- forsome reason, WordPress is not allowing me to post photos. I’ll try and share one later.

 

 

 

 

 

A Day in the Life of a Hospital Bed Rest

Everyone always asks me if I’m bored, being on bed rest at the hospital. I understand the assumption that boredom would be the enemy here- but the reality is that boring days are my good days. I’m so grateful for each boring day. Trips to the bathroom alone can turn a boring day into an anxious day. (I won’t trouble you with the TMI here.)

Even on happy boring days, the number of tests, medications, monitoring, doctor and nurse visits makes the day pass by faster than I would have imagined. So for those who have always wanted to know what a day of hospital bed rest is really like, I give you my average day:

5:00 am (every 3 days) A nice early visit from the Phlebotomist to draw my blood in case I need a transfusion. (Such a happy thought to start the day.) Sometimes they come at 2am just for fun. And then they leave the door open when they leave and I’m too tired to do anything about it so I hear all the traffic in the hall until the nurse finally comes in and closes the door.

6:00 am First monitoring of the day. Nurse checks blood pressure, temperature, and babies’ heartbeats. Pricks my finger to test my morning blood sugar. (Is there a single spot on me that hasn’t seen a needle yet?) She asks a list of questions about pain, bleeding, vision, headaches.

6:30 am I try and go back to sleep.

7:00/8:00 am The resident on duty comes by to see how I am, to report back to the OB/ MFM team during their morning meeting.

8:30 am Breakfast. Oh how I hate the hospital breakfast.

9:30 am Nurse comes back to prick another finger to check blood sugars. If I’m over 140, she also gives me an insulin shot. Then I get all the morning pills: Iron, prenatal, stool softener (very necessary when on bed-rest as digestive system slows waaaaay down) and a medication for my gestational diabetes. She checks my temperature and blood pressure again. If temp ever goes above 100.4, that’s an automatic ticket to emergency c-section as it could be a sign of infection. My blood pressure has always been low, but if that went too high, that also would be a “go directly to c-section.”

10:00 am NST (Non-stress test) to see how babies’ heart-rates are doing over the course of 30-60 minutes. They position two hockey puck sized monitors on my belly, one on each baby, along with the “Toco” monitor to watch for contractions. Babies need to have a certain number of heartbeat accelerations that are 10-15 beats above baseline to show they are responsive and doing well. If heartbeats are too low or too high and don’t accelerate, that’s another “go directly to c-section.” If there are intense contractions (fortunately none yet) that would be another “go directly to c-section” as contractions can be a sign of infection since my water is broken and could cause a serious bleed due to my placenta previa. Even small contractions cause more bleeding.

11 am MFM, Perinatologist, OB and/or Hosptalist do their rounds and check in on me to give me updates and answer questions after they have their discussions about patients at 9:00 am. I know that the later they come to my room, the less concerned they are about me. It’s a good thing to stay down the priority list if possible.

11:30 am Shower. My favorite part of the day. I get to stand up and shower all by myself, washing all the goop off my tummy from the NTS and heart-beat checks. I have to shower carefully, making sure I don’t get my mid-line IV bandage wet.

12:30 pm Lunch. Oh horrible hospital food- which is even worse when counting carbs and portions for gestational diabetes. When I call the cafeteria to order, they add up all my carbs and make sure I’m under 60-70. It’s very humbling and aggravating. No wonder I’ve lost weight since I arrived a month ago. Most of which is muscle, I know- but hospital food doesn’t help.

1:30 pm Another finger prick to test blood sugars. Another insulin shot if I’m over 140.

2:00 pm Tuesdays and Thursdays are ultrasound days. I never know what time it will happen. Someone from “transport” whose sole job it is to wheel people around the hospital, comes to my room with a stretcher. I get wheeled to the other side of the hospital where the ultrasounds take place. They usually leave me in the hall until the technician is ready, which can be a wait. Then the technician wheels me into the ultrasound room and I get to see my babies (though the images are very unclear for me and most of the time the monitor I can see isn’t working.) The technician is under strict orders not to say anything about how the babies look, but I’ve gotten good at crafting questions to get some info out of them during the scan. These twice a week scans are biophysical assessments that check the blood flow from the umbilical cords, babies’ heartbeats, amniotic fluid levels, babies’ movements, and to see if the babies are doing practice breathing for the required 30 seconds. Along with the NST scores, there’s a total of 10 points on the scoring system. So far these two girls have had perfect or nearly perfect scores each time, even baby A with her compromised placenta and amniotic sack. The babies don’t always do their practice breathing for the full 30 seconds, but it sounds like that’s not too unusual at this age- or even at 40 weeks. These ultrasounds take a long time. But having this view into my babies’ world- this environment that I’m doing everything possible to preserve for them as long as possible- always cheers me up and keeps me going for another day.

3:30 pm The technician wheels me back out to the hallway, and I wait there- often feeling forgotten for 30 minutes- until someone from transport comes back to take me back to my room.

4:00 pm Back in my room. I read, crochet or have a breakdown cry. These breakdown cries happen at least once every three days.

5:00 pm E comes to visit after daycare most every day, with either T and/or grandparents. Sometimes they wheel me out to the garden for my 30 minutes allowed time in the wheelchair. Sometimes they bring dinner- which is a welcome break from hospital food.

6:00 pm Dinner. During which I hope I have eaten enough for babies, but haven’t eaten anything to set off my gestational diabetes.

7:00 pm Another finger prick to test blood sugar. Another insulin shot if needed. More medication- iron, stool softener and diabetes medication. Another temperature and blood pressure check. Check baby’s heart-rates.

8:00 pm Crochet while watching TV. Sometimes T stays over if our parents are staying with E.

10pm-12am The final check for the night, depending on the nurse and how rigid they are about my schedule. I’m supposed to have the last blood pressure/ temperature/ baby heart-rate monitoring at midnight, but the kinder more flexible nurses will do it around 10 to let me have a longer uninterrupted sleep.

And then I wake up and start again. If the babies are lucky, I’ll have another 34 days like this. I’m grateful for each one. Today is 29 weeks and 1 day.

 

28 Weeks Homesick

Missing home.

On Tuesday night, the eve of 28 weeks, I went to bed feeling hopeful that we were finally inching away from the scary precipice of a micro-preemie birthday. While there are many amazing stories of babies born at 24-27 weeks who survive and thrive, the odds for survival increase dramatically after 28 weeks, so I wanted to be on that side of the odds if possible.

Three weeks ago when I arrived at the hospital and signed the consent form for a c-section that scary night, I could hardly imagine I’d make it to 28 weeks.

I woke up early on the morning of 28 weeks feeling some fluid leaking, and went to the bathroom assuming it was “just” more amniotic fluid…..I’ll spare you the more graphic details from here and just say there was a lot of blood and a huge “apple sized” clot (as the nurse later described it.)

T was staying over that night and I called out to him, my voice trembling, asking him to call the nurse.

Soon my room was full of doctors and nurses, hooking me up to monitors to find the babies’ heartbeats, my blood pressure and temperature being checked, and then I was wheeled out of my ante-partum room back to Labor and Delivery for the third time since I arrived at the hospital three weeks ago.

In the Labor and Delivery room, the nurse adjusted the heart-rate monitors for the babies, along with the “TOCO” monitor for contractions. Then they started the magnesium, not for contractions (if I had any that would be an automatic ticket to an emergency c-section anyway because of my condition) but for neurological protection for the babies if they had to be delivered this early.

From my Twitter friends, I already had heard how terrible it felt to be on magnesium. The nurses explained that it would make me feel hot, weak and woozy- and not in a good way. My mouth was so dry, but I wasn’t allowed to eat or drink anything in preparation for a potential c-section. The little slivers of ice they let me have were most delicious things I’ve ever tasted.

After the magnesium began its work, I barely had enough energy to say more than a few words. The nurse placed cool washcloths on my face and neck and set up a fan by my bed.

That day passed in a haze. That night, so exhausted, I tried to sleep, but every time I made even a slight adjustment to get comfortable, the monitors slipped off the babies and the nurses would rush back in to adjust them, waking me up again. In the morning, I was stiff and sore and tired. But the babies were still on the inside, and everyone assured me their heartbeats looked beautiful- not at all distressed by the events that were causing me so much distress.

Around noon on Thursday, the doctors finally decided the babies and I were stable enough to stop the magnesium. Soon after that, they wheeled me back to my ante-partum room. I lay on the bed, completely limp. So grateful to finally sleep without the monitors and IVs.

Today is 28 weeks, 3 days.

I miss sleeping next to my husband. I miss my daughter. I miss my house and the way the sunlight filters through the prisms on the front door, casting rainbows around. I miss walking and being outside. I miss all the things we were planning to do this summer.

When I think of spending another two months in this hospital room, I have to admit I sometimes cry big ugly gulps. And then I feel selfish. Of course I want these baby girls to have every extra day growing inside before they meet the big world. Even with all its faulty parts and precariousness, I know my womb is the best place for them at the moment.

There’s nothing easy about motherhood. And at least in my experience, there hasn’t been anything easy about becoming a mother either. Going through infertility, multiple IVF cycles, multiple miscarriages, finding the courage to try again, and then a terrifying pregnancy and hospital bed rest- all this requires a depth of love, determination and sacrifice that is beyond anything I could have imagined I’d be willing to do in my “younger years.”

It’s amazing to love two little people I’ve haven’t even met this much.

I saw them on the ultrasound on Friday, both snuggled so close to each other on my right side that the left half of my tummy is empty space. They weigh 2 pounds 4 ounces and 2 pounds 8 ounces. Tiny, but growing.

So I keep on going- one day at a time.

Thanks to you all for your support. I couldn’t do this without you.

 

 

 

 

Bed Rest Marathon

My home until the babies arrive.

In my life before this, I ran marathons. Lots of marathons. Never as fast as I wanted (that elusive qualifying goal for the Boston Marathon still out of reach) but I plodded along, enjoying the mental and physical challenge of the long miles and training.

I never would have guessed that all that training would be so useful for a different goal, years later. For the very opposite challenge: bed rest.

The only way to run a marathon is to take it one mile at a time, doing everything possible to forget about how long 26.2 miles is until those miles creep up and the finish line is finally in sight. Being admitted to Labor & Delivery at 25 weeks, not even in my third trimester yet, feels like the longest marathon I’ve ever run when I look at the road ahead.

The only way I can get through this is to take it hour by hour. Day by day. Plodding along. Trying to stay positive.

On Thursday morning, I was giddy with hope. The bleeding had slowed and turned brown. Trips to the bathroom were no longer traumatic. The babies continued to look great. The OBs and even the MFM team were talking about letting me go home that weekend. I mentioned the brown bleeding seemed very watery. They sent me for an ultrasound to look at amniotic fluid. Everything looked fine.

The bleeding started again that afternoon. I tried to convince myself it was dark brown, not red. The nurses and doctors disagreed. It was “new” blood again. Not too heavy, but red and watery.

I wasn’t going home for at least another week. When my mother and E showed up, all I could do was cry. Feeling so sorry for myself. Feeling sorry that E couldn’t have her mother around. I had “hit the wall” as they say in marathon lingo: I had reached the point where I was falling apart and not even close to the finish line.

E had brought a toy aquarium with goldfish to keep me company. But after seeing her mother in such a sorry state, she said she had to take them home because “they would be too sad to stay here.”

That night, at 26 weeks and 1 day, the OB finally came around to check me out and test fluids to see if my water had broken. Everyone assured me this was very unlikely.

When she came back in the room, she sat down, and I knew the bad news was coming.

“Your bag of waters has broken….. We need to move you to labor and delivery to monitor the babies and get you on an IV to give you antibiotics…… There’s a 50% chance you will go into labor within a week….. We won’t stop the contractions if they start now since they will likely be a sign of infection or distress….. We’ll have to do an emergency c-section if we see any signs of infection, with you or the babies…..and of course now that your water has broken, you won’t be going home until the babies are born.”

Within minutes of that news, they were wheeling me back to Labor and Delivery. It was a long, scary sleepless night hooked to all the monitors and and IV. Every time I slightly shifted position to get comfortable, the monitors would slide off and the nurses would rush back in to adjust them again.

In the morning, one of the MFM doctors came to see me. He explained the situation again, taking off his glasses to wipe tears from his eyes before answering my tearful and terrified questions.

That day, I drifted in and out of sleep, listening to the babies’ heartbeats on the monitor. Yesterday’s hope of going home feeling so frivolous compared to the fear of having these babies arrive before they even reached their third trimester.

After babies had proven their strong heartbeats and no contractions appeared, the doctors decided that I was no longer an immediate risk of going into labor (or maybe they just needed the L&D room) so the nurse wheeled me back to the ante partum quarters.

Today T and I had a tour of the brand new NICU, which is amazing. Each family has their own suite where the babies will stay in their incubators, with a pull-out couch so we can stay with them overnight. The hallway walls are lined with photos of NICU grads as tiny babies as young as 24 weeks, framed side by side with the photos of the same baby all grown up. We paused at the photo of twin girls born at 27 weeks, so tiny and fragile covered with wires. Now beautiful, healthy, happy ten year-olds. T squeezed my hand and I saw tears in his eyes too.

So here I am, at 26 weeks and 4 days, making myself at home in my ante-partum room for what I hope will be a long marathon of weeks on bed rest. Taking it one day at a time, hour by hour. Trying not to look too far ahead down the road. Just grateful for each day. And for all of your support.

I tell all the doctors and nurses about you all; how amazing and supportive you all are. How lucky I am to be part of this community and “know” you all, even if virtually. I can’t thank you enough for all the encouraging stories, cheer-leading, care packages, and visits from local blogger/ twitter friends.

Running is a solitary sport. But thanks to you all, I never feel alone here. And that makes such a difference.

I’ll keep you updated when I can. If anything happens suddenly and I can’t give an update, I’ve given T instructions to share any news for me on Twitter.