Category Archives: NICU

Home at Last

Sylvia and Carina's first home: the NICU.

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.

Home at last.

 

 

Advertisements

Homecoming- Still Crossing the Bridge

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

Twin solidarity, taking on the big world together.

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

Reunited at last.

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.

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.

IMG_1614

Carina Eleanor

IMG_1608.JPG (2)

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.