SMSs From the NICU

Prematurity Awareness Week 2013: How Do You Do It?

World Prematurity Day November 17In the United States, 1 in 9 babies is born prematurely, 1 in 10 in Canada. Worldwide, over 15 million babies are born too soon each year. While not all multiples are born prematurely, a multiple birth increases the probability of an early delivery. Babies born prematurely, before 37 weeks gestation, are at a higher risk for health complications in infancy, some of which can have long-term effects. Full-term infants are not all free from their own health complications, of course.

In honor of November’s Prematurity Awareness Month, led by the March of Dimes, How Do You Do It? is focusing this week’s posts on The Moms’ experiences with premature deliveries, NICU stays, health complications, special needs, and how we’ve dealt with these complex issues.


Our twins Rahul and Leila were born at 31 weeks gestation, in Hong Kong, where I temporarily moved from Chengdu for their birth and initial care. Only my husband Maher, and I were allowed to visit the babies in the NICU.

2 weeks after they were born Maher returned to work in Chengdu. He would fly into HK every Friday evening though, for the weekend.

These are some of the messages I sent to him, Houda (my mother-in-law), and my parents from the hospital over the next month. I was only allowed to send messages from outside the NICU unit. Some days I couldn’t get myself to go out and leave the babies alone any longer than I already did, so I’d sneak into one of the breastfeeding cubicles that were set apart from the rooms where the babies were, and I’d secretly turn on my phone for a couple of minutes, scramble to send a quick update to Maher in Chengdu, and to the grandparents who were at the apartment with me in HK.

They were recovered from Houda’s phone well after we had returned to Chengdu. Unfortunately, the dates were not saved.

Rahul came home after 3 weeks in the NICU, Leila after 6.


Leila is better. They will start feeding her again soon. She weighs 1480 (kg). Not aspirating undigested milk anymore. No stool yet though. Rahul is fine. Quite sleepy this morning.

They started feeding Leila again at 10 am. [There was a fear that Leila had caught a dangerous infection in her gut so they briefly stopped feeding her.]

Rahul is 1910 (kg) now, and he is difficult with me on the breast! Doesn’t eat and then when he does it takes ages to burp him:) Leila is tolerating the milk rather well. She ate from the bottle again very well. Still no stool though. 36 hours now. Can you see if you can buy baby monitors to keep near the baby with a system so I can hear them in my room if they cry. [Rahul was going home soon.]

Leila is doing good. Big bowel opening this morning Eating 13-14ml now.

Leila is good. Eating 16-18ml. She had medium size stool last night at 3 am. She seems calm. Belly slightly distended but soft so it is ok. They are aspirating some undigested milk as usual. How is Rahul? [He went home already and was taken care of by his grandmothers teta Houda and nani Varsha.]

Leila is eating 20ml. Digesting well. She is calm right now. Sleeping.

Did Rahul eat and shit? What consistency? [He was at home.]

Leila is ok. Still eating upto 20. I haven’t had the chance to get more info. Rahul had a bath. He was very calm. He weighs 2010. [He went back to the hospital for an ROP Retinopathy of Prematurity test.]

Leila is eating 20 ml every 2 hours like before. She looks bigger. They will weigh her tomorrow. Will ask again if I can hold her. Nothing else.

Maher prefers cousa (zucchini) to chicken. But he likes basela (peas). [Houda trying to decide what to cook one Friday for Maher when he came to HK.]

Leila is good:) Did Rahul eat? Is he calm?

Maher said feed him (Rahul) if he is hungry. Maher has all night to feed him. [A Friday afternoon. Maher came to the hospital to see Leila and would later go home to see Rahul.]

Is he eating now?!

She is good. Eating 20ml. Still a little distended. Weighs 1645.

Leila is much better. Eating 23 ml. After a glycerine tube insert she shat many times in the last day.

She weighs 1665 and is eating 26. Looks good.

She is good. Eating 28 and they want to give her the bottle [as opposed to the feeding tube] a little more often.

Everything is good. He weighs 2705 and should eat between 90 and 120.

She is very good. No tube in her mouth. Everything else same.

She is good. Eating 30 to 35.

Is he eating now? The next time he gets hungry give him some formula pls. Thanks. [I was still at the hospital so couldn’t get him breastmilk in time.]

She is in a crib with no wires. She weighs 1855 and she breast fed really well. She didn’t swallow a lot but sucked well. Prepare a crib for her at home soon

She is good. Same same.

She is ok. Eating 45! Weighing 1935. Temperature is still a little low. [She was in a crib now and had to regulate her own body temperature.]

Rahul and I, day 4 or 5 in the NICU

With Rahul, day 4 or 5 in the NICU

Leila in the NICU, 2 weeks old

Leila in the NICU, 2 weeks old


Natasha is mum of 4-year-old fraternal twins Leila and Rahul. She moved to Koh Samui, Thailand, with her children after spending 7 years in China. Her husband Maher, travels back and forth because work is in China. She has started practicing her yoga more regularly again, and even teaches a few classes a week, after a three year break. She blogs at her personal site Our Little Yogis and at Multicultural Mothering.

Triplets?! Angela’s Story of Love and Loss

Prematurity Awareness Week 2013: How Do You Do It?

World Prematurity Day November 17In the United States, 1 in 9 babies is born prematurely, 1 in 10 in Canada. Worldwide, over 15 million babies are born too soon each year. While not all multiples are born prematurely, a multiple birth increases the probability of an early delivery. Babies born prematurely, before 37 weeks gestation, are at a higher risk for health complications in infancy, some of which can have long-term effects. Full-term infants are not all free from their own health complications, of course.

In honor of November’s Prematurity Awareness Month, led by the March of Dimes, How Do You Do It? is focusing this week’s posts on The Moms’ experiences with premature deliveries, NICU stays, health complications, special needs, and how we’ve dealt with these complex issues.


I’ve told my story so many times, you’d think I’d be able to write it down too. I’ve given talks to women’s groups and loss groups about it, done blog posts about it, etc., but something about this one is different. Maybe it’s because I know the audience reading this will be different… you’ll be in the thick of preemie-hood or the NICU or bed rest and you’ll want comfort and hope…

And I won’t be able to give you those things… Well, not in the way you’d expect at least. You see, my birth story ended with the loss of one of my triplets. I don’t want to scare you – having a preemie doesn’t mean you’ll experience loss too – but I do want to be real with you. One of the most real things I can do or say is this… my hope comes from knowing he made a difference in his 49 days of life. It comes from seeing his surviving brother and sister meet milestones and overcome obstacles. It comes from knowing that my story gets to be told and that it matters. And I hope you’ll feel that hope in what you read today, and not the sadness of loss.

I got married in 2007 and always knew I’d be a mom. We got pregnant right off the pill a year later, but sadly, we miscarried. We. Were. Devastated. I never thought I’d be dealing with miscarriage. Or what came next. Three years of infertility, another miscarriage, 2 rounds of IUI, and finally – finally – we were pregnant.

Angela-2

With triplets.

Angela-5

I was scared all over again. I was placed in the high-risk category. We nervously counted down the weeks and each week were surprised that all was going well. I had a shortened cervix, so I had a cerclage placed. At 22 1/2 weeks, I was placed on home bed rest to slow things down a bit. But that only lasted 2 weeks, and I was off to the hospital for a month of bed rest there. It was an experience that stuck with me so much, I even wrote a book about it.

Now the goal was to keep the babies cooking as long as possible. After 11 days, Baby A’s water broke, but he stuck in there for 19 more days.

From before birth, Carter fought to live. He fought to help his brother and sister live. While I was in the hospital on bed rest, his sac ruptured 19 days before his birth, leaving him unprotected. Because he was able to stay in, his brother and sister were able to continue to grow.

It would be food poisoning that would finally do me in. 2:30 a.m. and I was in full blown contractions. They couldn’t stop them, and I delivered my trio at 27 weeks and 5 days at barely 2lbs5oz each. My mom was in Hawaii. I’ll never forget how crushed she was to not be there. They were immediately taken to the level 3 NICU and I was taken to recovery. I don’t remember much about that first 12 hours. I do remember that at one point, my husband had to tell me some bad news, and I was so drugged up that I just kept encouraging him like it was happening to another baby and not ours.

birth of triplets

At birth, Carter was the weakest. On the first day, the doctors didn’t think Carter would survive. His lungs weren’t working. After a tense few hours, it was evident Carter was a fighter as he survived his first brush with death.

Those first few days they were in the NICU weren’t too hard, probably because we were still in shock and adjusting to the reality of things. It was the day of discharge for me that things got real. We got bad news on all three of them. It was the first time I cried. I wouldn’t cry again for 44 days…

During his first few days of life, he struggled with high glucose, needing high oxygen support, and needing morphine and blood transfusions. Little did we know this was just the beginning. The doctors also discovered that he and his siblings all had E Coli sepsis, which wreaked havoc on their lungs and caused them to have brain bleeds. They were diagnosed with level 3 and 4 brain bleeds and hydrocephalus, a condition which can lead to cerebral palsy or other issues.

At home, I focused on pumping – getting over 70 ounces a day of the liquid gold. It kept me sane, giving me something to do for the babies. I went to the NICU every single day. I think I might have missed one day in total. I had to be there. I had to.

After only a week of life, Carter started to experience edema, and we began to lose the baby we knew and see a more swollen boy. He would live the rest of his life with this challenge, getting up to 6 ½ pounds at one point when he should only have been around 4 pounds at the time of his death. Throughout the weeks, Carter’s journey would be one of constant ups and downs. He would have a good day, only to have a bad day the next. After about two weeks of life, we began to discuss the possibility he might not survive this journey. We kept our faith and refused to give up on our little boy.

Each baby had their ups and downs. Braden had ruptured bowel at 7 days old, Tenley and Braden both had to be transferred to a higher-level hospital and had surgery for their brain bleeds that first night there. She’d have 2 surgeries by the time she left 86 days later, and he’d have 4 surgeries and leave after 111 days.

Even when Braden & Tenley continued to make progress and moved to a different hospital, we did not give up hope that Carter would recover and be well enough to make the move with them. But, the night of their transfer, we were told he only had a 10% chance of making it. We still remained hopeful, and our boy still fought. For the next few weeks, we had many ups and downs, many times we didn’t think he’d make it. At one point, we said our goodbyes and made peace with everything that might happen to him. We knew he’d be going to a better place, and we knew we’d be okay too.

So many emotions coursed through my body during these days. It was unbelievably hard. It tested my faith, my marriage, my friendships, my everything. I was in a whole new world. I could spout off terminology like I was one of the doctors in the NICU. I kept a detailed journal of everything – the updates, the records, the stats – everything. It was another way I stayed sane.

Then, things took a turn for the worse as his kidneys shut down and he was on full support. But, they also took enough of a turn for the better that a small window of opportunity was found to transfer him to the same hospital his siblings were. One last chance. After he was moved, he made great strides. He fought hard, and he won several battles. He was coming out of the woods…

Tenley would eventually get contaminant meningitis at the site of her brain surgery opening, which sent her back to level 3 and almost took her life. It might not have been that bad to deal with, except for the fact that it happened at the same time as we were losing Carter.

At the same time as Tenley was back in level 3, Carter wasn’t keeping his stats up and was weakening. They couldn’t figure out why. They did what they could, but it didn’t look good. He hung in there for awhile, but that Thursday night, his stats dropped very low – dangerously low – and they couldn’t get him stable again. We were called, and we came. They found that fluid had filled his lungs. He had an infection – the deal breaker, we knew. And, it was time to let him go.

It was my husband who finally came to the decision to let him go. And I had to let him make that decision. As cowardly as it may seem, I couldn’t do it. Sure, I said goodbye and I made my peace, but I couldn’t bring myself to say those words to the doctors.

We held him on Friday, the 27th for his last 2 hours of life and for the very first time in his entire life… we watched him slip away, and we comforted him during his last moments as we sent him off into Heaven, knowing we’d see him again one day. He fought right up until the end. He helped save his brother and sister, and we believe he touched many lives with his fight and his story…

It had been 44 days since I cried. I tend to only cry when I’m frustrated or angry. Sometimes when I’m overwhelmed, but rarely when I’m sad. But, I cried. I lost it. Hyperventilated when the doctors took him off the machines. Maybe I was mad at the world in that moment, I don’t know…

IMG_5427

I only cried a few times in the weeks after. Something in me knew I had to keep going for my survivors. I was still in the thick of it and needed to focus on them. I think I made a conscious decision to choose to be okay. I wanted to celebrate the 49 days I had with him, and not mourn what I wouldn’t have in the years to come. This perspective is what gave me hope and allowed me to move on. Granted, I did have emotional affects from the experience and had a bout with post-tramatic stress disorder, especially once both his siblings came home – and he didn’t.

Carter announcement

All this is hard to hear – and write – but it needs to be shared. It’s one of the unfortunate realities of having a preemie. It’s why the research and the support and all the community surrounding it is so important. It’s why my husband and I do a yearly fundraiser and are in the process of forming a non-profit. You can actually participate in this year’s fundraiser currently by going here.

I do want to end on a positive note… today, Braden and Tenley are about to turn two. They’re thriving, overcoming obstacles, hitting milestones, and making us feel blessed in every way. Yes, they’re preemies. But they’re more than that. They’re fighters. Survivors. Miracles. And, they’re my gift.

then now

SMALLtwobirds9604

Help the Preemie Community – Shop the Celebrate Carter Fundraiser

Prematurity Awareness Week 2013: How Do You Do It?

World Prematurity Day November 17In the United States, 1 in 9 babies is born prematurely, 1 in 10 in Canada. Worldwide, over 15 million babies are born too soon each year. While not all multiples are born prematurely, a multiple birth increases the probability of an early delivery. Babies born prematurely, before 37 weeks gestation, are at a higher risk for health complications in infancy, some of which can have long-term effects. Full-term infants are not all free from their own health complications, of course.

In honor of November’s Prematurity Awareness Month, led by the March of Dimes, How Do You Do It? is focusing this week’s posts on The Moms’ experiences with premature deliveries, NICU stays, health complications, special needs, and how we’ve dealt with these complex issues.


Want to help the preemie community and get some holiday shopping done? The Celebrate Carter fundraiser is here! This year, it’s a shopping catalog of various vendors who are donating a percentage of their sales to the fundraiser, which benefits two deserving preemie/loss related charities.

ABOUT: Carter Bickford is the first-born son of Craig and Angela Bickford of Cypress, Texas. He was born on December 9, 2011, along with his triplet brother and sister, Braden and Tenley. They were born very sick at 28 weeks. Sadly, Carter passed away at 49 days old from complications of prematurity. The Bickford’s first time holding him was also their last, but they are grateful for every day they had with him. He was a true fighter and his story has reached thousands. His parents hope that by doing these fundraisers annually, they can raise money in his honor to help other organizations reach even more people.

Home page banner

BENEFITING: This year, the beneficiaries were chosen for their involvement in both the preemie community and the loss community. Celebrate Carter is proud to be partnering with Graham’s Foundation and the Zoe Rose Memorial Foundation.

GsF New Logo   ZR logo 2012

WHEN: Shop between 11/15 and 12/1 at www.celebratecarter.com – over 70 vendors!

You can find more info about the fundraiser on the website, the Facebook page, or in the flyer below. You can also share this flyer with friends and family so they can participate too!

Final Celebrate Carter Flyer

NICU Names: Guilt, Anger, Sorrow

Prematurity Awareness Week 2013: How Do You Do It?

World Prematurity Day November 17In the United States, 1 in 9 babies is born prematurely, 1 in 10 in Canada. Worldwide, over 15 million babies are born too soon each year. While not all multiples are born prematurely, a multiple birth increases the probability of an early delivery. Babies born prematurely, before 37 weeks gestation, are at a higher risk for health complications in infancy, some of which can have long-term effects. Full-term infants are not all free from their own health complications, of course.

In honor of November’s Prematurity Awareness Month, led by the March of Dimes, How Do You Do It? is focusing this week’s posts on The Moms’ experiences with premature deliveries, NICU stays, health complications, special needs, and how we’ve dealt with these complex issues.


Aside from the times I truly feared for the health, happiness, and life of my babies, one particular thing stand out when I think back on how very emotional the NICU can be: my children’s names.

My husband and I had given so much thought to their names. We’d discovered they were both boys when I was 18 weeks along, and had full names picked out for them by before I was 20 weeks. We always referred to them by name from then on, never as Baby A or Baby B. We chose names that were very different but harmonized well. It was important for us that their names not reflect their status as twins: we very much wanted them to feel like they had individual worth from before they were born. (This is a personal thing, I know, and I am not disparaging how others name their multiples; I am simply stating how things were for us.) Even before they were born, we felt that they (particularly our Mr. A) fit perfectly with their names.

One other thing of note: I kept my maiden name. We discussed what to do with the boys’ surname—mine, his, hyphenate, combine, make up an entirely new one—and eventually decided to give them my husband’s last name. We both like the name, and as my husband is both adopted and an only son, we thought it might matter to their paternal grandparents.

When they were born, the boys were on record as MyLastName,MyFirstNameBBA (for Baby Boy A) and MyLastName,MyFirstName,BBB. And they kept those names. And kept and kept and kept those names. The nurses made nametags with their given names and placed them on their warmers, but everything else was MyLastName,MyFirstName,BBA/B.

namesThe names on their ankle bands. The names on my wrist bands. The names we had to give when calling to ask for updates. The names we had to state at the intercom to be admitted to the NICU. The names we had to sign in under to visit them. The names on the whiteboard. The names on the labels I stuck to each bottle of expressed breast milk. The names on the records—with a huge red NAME ALERT marked, to remind doctors and nurses that there was another patient with an extremely similar name, and so meds and procedures must be very carefully checked to ensure that they had the correct patient. The names printed out on the instructions and med dosages for Code Blues taped on their warmers. The names the doctors used at rounds.

I hated it. I cannot even begin to describe the feelings of anger, sorrow, and helplessness I felt about their NICU names. Not a single part of those names were actually my sons’ names. At heart, I felt like I was not their mother; that they had been stolen from me and renamed what the hospital thought was best. I knew my boys needed to be in the NICU, and I accepted that. But it was hard, so very hard, to not feel like their mommy. I didn’t change their first diapers or put on their first outfits (which came later). I wasn’t the one who decided what and when and how much to feed them. I couldn’t even hold them without permission (although that quickly ceased to be the case with Mr. D). And they didn’t get their real names, their true names, the names we had loved and loved them with, until they came home. Even when Mr. A was transferred from his birth hospital to the children’s hospital, he was admitted as MyLastName,MyFirstName,BBA. I raged and pleaded, but “nothing could be done”. A simple matter of hospital protocol meant that my sons had been robbed of their identity.

I realize this is not rational. I even realized it at the time, despite being overwhelmed with postpartum hormone shifts and scary diagnoses and not being able to watch my sons breathe as I fell asleep. I think I channeled most of my grief at the whole situation onto the issue of their names. But recognizing this intellectually is not at all the same as feeling it emotionally. And emotionally, I felt like their names had been stolen from me, along with all those precious newborn moments I missed, shared with strangers, or experienced in a setting that made the whole thing feel incongruous. My babies were simply not my own: they were shared with a very large staff of doctors, techs, and nurses (some of whom I never met or only briefly met) and all the love in the world could not change that. And their names reflected that. It hurt, and even now, a year and a half later, I am not “over” it. I don’t think I ever will be. I don’t see how one ever could be.

In the MOMs Club – Just Barely

In the MOMs Club - Just Barely

Not to bring anyone down, especially since this is my first post for HDYDI, but I’m barely part of this club. You know, the Moms of Multiples club.

You see, I have triplets. But I don’t. I have twins. But I don’t. I’m neither here nor there. And it’s hard.

Bickford Babies

I have what are called ‘surviving’ or ‘incomplete’ triplets. I carried three babies, and I birthed three babies, but only two of them survived. Today, Braden and Tenley are doing well at 19 months old (16 adjusted), even though they were born at only 27 1/2 weeks old.

You can read more about how we lost baby A, Carter, by going to his special website we created to help raise funds for organizations that work to help parents who have experienced the NICU or loss.

Celebrate Carter Logo

It’s a tough spot to be in. I’m now part of a new club – the club no one wants to be a part of – the loss mom club. But you know what? I’m okay with it. I’m okay with it because it means I get to write and share my story. I get to talk about Carter all the time. He gets to make a difference. I’m okay with it because I’m writing several books to help others relate to loss moms, deal with bed rest, or get through a tragedy like the loss of a child. I’m speaking at conferences. I’m raising funds through Carter’s fundraiser each year. I’m choosing to see the good in the midst of the bad.

So, when you read posts by me, know that there will be times when I’m a triplet mom, times when I’m a twin mom. And times when I don’t know what kind of mom I am.

Braden & Tenley

And that’s okay.

And it’s also okay for you to be uncomfortable. Or to relate. Or to empathize. It’s okay for you to ask questions. Or seek out support.

I look forward to representing the unique position that some moms of multiples find themselves in – celebrating and grieving at the same time.

When you stand and share your story in an empowering way, your story will heal you, and your story will heal someone else. ~Iyanla Vanzant

I hope you’ll join me as I share my take on things – and be sure to let me know in the comments below if there’s anything specific you’d like me to cover!

AngelaAngela is a stay-at-home mom raising surviving triplets. She lost her first-born triplet, Carter, after 49 days, and her survivors, B & T, keep her pretty busy with their ongoing needs as a result of their prematurity. She manages to find time for her business and personal blog. Her goal in blogging is to share with others that it’s possible to survive after loss. She and her husband live in the Houston, TX suburb of Cypress. She also blogs at Thirty-One:10.

Dental Work

Tooth

Photo Credit: mmmcrafts

My daughters had their 6-month dental checkup with the dentist we love. They lost the first of their baby teeth since their last visit, and their adult teeth are coming in quite crooked. That, it turned out, was the least of our problems.

You may recall that I learned, to my dismay, that premature birth can cause dental problems. In my identical daughters M and J, this manifests as enamel hypoplasia, or the lack of adequate enamel on several of their teeth.

J’s 6-year molars have come in. According to the dentist, one of them has 2 little holes in it, surefire locations of future cavities unless we get them treated. I asked whether it was related to the hypoplasia, and our dentist said that it probably was. The shocking part? The holes developed before the tooth ever erupted. The pre-cavity unhappiness started when the tooth was still inside the gum.

Every time I think we’re past the effects of prematurity, another one rears its head.

Corn Syrup in My Babies’ Formula?

I gave birth to my twins, J and M, when they reached 33 weeks gestation. They were 7 weeks shy of being a fully cooked 40 weeks along when they were born, and 2 weeks early even for my minimum goal of 35 weeks. We were incredibly fortunate that they didn’t have any serious complications, but both babies still needed special care in the NICU.

I’ve always been a parent who researches, so I was pretty well-versed on the phases of development the girls were going through at various points in my pregnancy. Still, seeing my preemies brought it home in a visceral way that no research could have done.

A very small newborn, with lots of cords and wires all over her.Both M and J were rather furry when they were born, covered with lanugo, or the in-utero hairs that usually fall off well before babies emerge from the womb. I could only distinguish this fur from their eyebrows with the help of the thin line of hairlessness that separated their foreheads from their brows.

The girls’ skin was loose on their bones. After all, they hadn’t yet reached the milestone of 35 weeks, when their baby fat would make them newborn plump. Without the natural insulation of my body or their own body fat, they had to stay in warming isolettes. They couldn’t maintain their body temperature, so the hospital staff did so artificially. On two priceless occasions, we were allowed to provide kangaroo care, placing our tiny little babies inside our shirts, against the warmth of the skin on our chests, letting them bond to us.

Infants who will be born full-term are still getting their nutrition from the umbilical tube at 33 weeks and nearly 2 months afterward. Oxygen and nutrients cross from mommy’s blood to baby’s in the placenta. Getting energy and the building blocks to grow their bodies doesn’t take any work on their part. They can focus on growing, practicing sucking and kicking and, if they’re lucky enough to share the womb with Sissy or Bro, play with their best bud.

My girls were born at 3 lbs 6 oz and 3 lbs 9 oz. They weren’t to have the easy nutrition the placenta granted them. Instead, they were going to have to gain weight with the help of calories they ingested orally. At 33 weeks, babies are usually well practiced at the art of sucking, but they’re not built to use that skill to take in all their nutrition. To help them out the nurses threaded feeding tubes up our teeny babies’ noses, directing food into their stomachs.

That food came in the form of Enfamil Lipil, a high calorie formula for preemies. M and J needed nutrition to provide not only the basics they would have received from my body, but the extra energy they needed to breathe and otherwise experience life outside the womb. Much as I was committed to breastfeeding, breast milk wouldn’t cut it. It just didn’t have enough calories.

Besides, my body was trying to figure out what was going on. Were there live babies to be fed, or was it time to get out of reproductive mode? I’ve known moms with micro-preemies whose milk never came in, their bodies interpreting the early birth as a miscarriage instead of a live birth. Despite my pumping every 3 hours started a couple of hours after the birth, it took days for my milk to come in. A full-term newborn can afford to live on colostrum for a day or two, since they have plenty of energy saved up in all that squishy baby fat. My babies weren’t squishy.

The nurses at the hospital were (with one exception) fantastic. They took every teeny tiny drop of colostrum or milk I could squeeze out. To retrieve it, they filled the doll-sized bottles I pumped into with formula to retrieve every spray of breastmilk. They split that formula in half and fed it to each of my daughters through their feeding tubes.

Lipil Ingredients. The first ingredient is corn syrup solids.I hadn’t done any research into formula before M and J’s birth, being completely committed to exclusive breastfeeding. It never occurred to me to check the ingredients on our hospital-issued formula. I thought of it as medication, something beyond my area of expertise that I should entrust to medical professionals to prescribe. Imagine my surprise, then, when years later I finally read the ingredients and discovered that my babies’ high calorie formula got its high calories from corn syrup. Corn syrup was actually the first ingredients, meaning that there was more of it in the formula than any other ingredient. The composition of the formula has since been changed, but boy, did I feel silly claiming that my daughters’ first refined sugar was the cake at their first birthday party.

Sugar is sugar, I know, but I prefer to eat and feed my family minimally processed foods. I don’t like the idea of ingesting trace amounts of stuff used in processing. Don’t get me wrong. I buy prepared foods like sliced bread, lunch meats, chocolate (lot of chocolate) and crackers. I try to steer clear of non-sugar sweeteners and high fructose corn syrup. I like ingredients to don’t force me to fight the urge to start drawing out organic molecule structures.

We live and learn. If I were to do it again, I would research everything going into my newborns’ bodies. Perhaps I would decide that that brand of high calorie formula was the way to go. Perhaps not.

I always read the ingredients now.

Sadia is raising her 7 year-old identical twin daughters, M and J, in the Austin, TX area. She is divorced and works in higher ed information technology. She is originally from the UK and Bangladesh, but has lived in the US since college.

A preterm MoM intro

With the new year upon us I thought I’d take on a new blogging opportunity. Let me introduce myself. My name is Carolyn and I am a mom to fraternal b/b twins, living, parenting and working in Ontario, Canada.

My twins are 2.5 years old and are spunky little men, with great personalities of their own. My guys are little for their age due to arriving at 27 weeks and challenging their parents from day one! They are amazing fighters and have come so far!

Canada offers mothers maternity and parental leave if they’ve been working enough hours leading up to the arrival of their child (ren.) I was lucky to be one of those people. I actually took 16 months off to be with my babies. The times were tough, but we made it through. There was definitely a lot of frustration and tears for everyone involved, but these little men taught us much about perseverance and developed our ability to kick adversity in the b-u-t-t time and time again.

I have been writing a personal blog coming up on 2 years about the ups and downs of my family. You can find my blog at http://twintrospectives.blogspot.ca. We also have an older boy, born at 31 weeks, who the twins love and learn so much from. These 3 boys have been our family’s inspiration.

I usually blog on the topic of prematurity and what might come afterward for others and what has evolved for my family in particular. The experience of preterm birth has given me a positive outlook on life, which might sound weird, given the fact preterm birth is the scariest thing most who go through it will ever experience. I figure if I can get through such an uncertain time, along with my family members, then there isn’t really anything else we can’t figure out. This is what I hope to be able to teach my children as I mother them and watch them grow during their childhood.

Aside from helping my own children along the way, my greatest passion is assisting new families going through the preterm birth experience, one step at a time. I have found my way into my local Multiple Births Canada (MBC) chapter, now working as a peer health worker (outreach worker,) as well as I’ve  just taken on a co-chair role in the development of MBC’s Preterm Birth Support Network.

In 4 short years my amazing little preemie men have taught me so much about life and I hope to be able to share some of what they have been teaching me with the How Do You Do It community.

Reunited

I got the best news in a long time today. A college friend’s twin boys were reunited at 2 months old. Her second NICU baby got to come home from the hospital, 7 weeks after his brother.

In the middle of the joy I felt for my friend, though, I felt an upwelling of the sadness, anger and helplessness that tainted the joy of my own babies’ release from the hospital, over 5 years ago. Homecoming is one of the ways that the NICU experience can differ for parents of premature multiples in comparison to preemie singletons. Many twins and triplets are released from the hospital simultaneously, but many are not.

Our daughters were born 7 weeks early, but had few problems apart from their small size. J had a hole in her heart, which eventually resolved itself, and M had a facial cleft that turned out not even to require surgery. Neither of these conditions required hospitalization, so they were textbook “feeder growers,” newborns who were hospitalized until they had fattened up enough to maintain their own body temperature and had the strength to suck enough nutrition to keep them healthy.

Our girls didn’t need any assistance breathing; they’ve been verbal and long-winded since the start. They were keep in warm isolettes, and fed a mixture of high calorie formula and my breast milk through feeding tubes inserted through their noses and threaded into their stomachs. Every three hours came a diaper change, weighing, blood sugar measurement, temperature measurement and feeding. We watched every number as they rose and fell, and I promised myself I would take notes when they got home so as not to double feed one baby and starve the other. J and M were cared for by the same nurse, so their schedules were offset by 15 minutes. One benefit to having NICU babies was that they were on a clockwork schedule by the time they came home.

There were 3 criteria to be met, we were told, before the girls could come home. They had to weigh 5 lbs (2.25 kg), be able to maintain their own body temperature, and take 8 meals in a row by mouth, drinking at least 31 mls of formula/breast milk each time. Every now and then, when J asks for her “warmed up milk, please,” at breakfast or dinner, I wonder at the way she guzzles 8 oz of milk down and think back to the days I tried to get her drink 1 oz by force of will alone.

We wanted all the girls’ energy to go to growing at first. Somewhere in the first week, I think, they were introduced to doll-sized bottles. It took a few tries to get them to suck, first 1 ml, then 3, more and more each meal. They finally made it up to 31 mls at a time, but couldn’t keep it up two meals in a row. It was just too much work.

M couldn’t finish her bottle at every feeding, but she made an effort. Once, I was even allowed to let her suckle at my breast, although the nurses took her away before she exhausted herself. J was less predictable. She’d suck like a champ and then suddenly get distracted, seemingly more interested in playing with the bottle than drinking from it. Two weeks in, she broke our hearts by refusing two meals in a row and being put back on her feeding tube. It was the only time I saw my husband so upset that he couldn’t stay in the NICU to monitor every last detail of our babies’ care. A friend took him out for a beer.

When our girls were 2 weeks old, the hospital staff pronounced them to be the healthiest babies in the NICU. They could afford to be downgraded to a less fancy-schmancy NICU within the same hospital network. We talked it through and agreed to free up their beds. However, when the paperwork arrived, we were asked to sign a waiver releasing both the hospitals and the ambulance service of responsibility for the babies during their transport. There was no way we were signing that, so the girls stayed put.

Two days later, M was ready to come home. She hadn’t quite made the weight cutoff, but they couldn’t see any reason she wouldn’t be just fine at home. She passed the carseat test, and home we went.

mcominghomealone

J was still on her feeding tube. I felt more torn as a mother of twins in that moment than I ever did before or since. I was celebrating the health of one of my daughters, but leaving the other alone at the hospital, without even her sister with her. My husband was away for an army training exercise, and I was still recovering from my C-section. Fortunately, my father-in-law was able to stay for 3 weeks, and drove us the 30 miles to the hospital every day so that I could deliver breast milk and steal a few moments with J. I couldn’t stay too long, though, since M was in her carseat in the hospital parking garage with Grampy.

After 5 long, agonizing days, J was ready to come home. It finally felt like my life as a parent could start. My friend just ended 48 days of that waiting, and I hope that her heart can finally begin to heal.

Did you get to bring your babies home at the same time?

Sadia’s daughters, M and J, are still short for their nearly 6 years, but Sadia is short for her nearly 33, so it works out nicely. They guzzle milk, grow, and keep each other busy in El Paso, TX.

Prematurity and School

When my babies and I returned to Chengdu from Hong Kong after their birth at 31 weeks of gestation, they were almost 6 months old. Many of our friends came over to visit; to meet the tiny babies.

One of those friends was a school principal. Since we’ve been considering schools, and when to start them – I’ve heard from friends that children start anywhere from 2 to 6 years old depending on where they come from and what their parents can manage and prefer to do – I remembered something she said to me.

For every week of prematurity, hold back the child from starting school by a month.

When we visited a school a few months ago, that principal also suggested that we hold them back rather than push them into school early.

This all worked well with my thoughts on not sending my children in too early, on not pushing them.

Then more recently, yet another principal talked to us about some of her experiences in the past, with premature children having difficulties in music classes, for example.

I’ve felt that my children are in the average of their age group. I can’t say that on any scientific basis, but I’m not too bothered with what they can or can’t do, of course that is keeping in mind that they are highly energetic children with no major, obvious issues. They talk. A lot. They play and laugh.

Last month I sent my 2 year 3 month olds to school. They were the youngest in their class, by a few months. At this stage of extremely quick growth and change, I’d say they were the youngest by far. So after a week of battling with myself, after having done the exact opposite of what I believed in, and what I was advised – I pulled them out of school.

In terms of separation from me, interaction and focus in class, they did very well, but I wasn’t convinced that it was the best thing for them at that time. My son was crying in his sleep, and unusually quiet and forlorn. My daughter became even more clingy than usual. I saw obvious changes. Of course there will be an adaptation phase whenever they start school, but we didn’t have to have it at that time. I have the luxury of being a SAHM, and all the plans that I made of what I would with my free-time, can wait a few more months!

But mainly I am hoping that the extra six months at home with us, will give them more confidence and security, other than more words, the ability to better express their emotions, they’ll be potty trained. After speaking to a number of close mum friends, I realized that almost all had waited until their children were 2.5 or 3 before sending them to school, and even then, they only went 3 half days every week.

Now, we are doing many activities that include music, dance, and just simple play – and we are all happy with our decision. I’m sure that the 6 months I hold them back will give them time for growth, and confidence.

My question to parents, both of premature children and not, to teachers, educators, paediatricians, and anyone who has an opinion on this: When did your children start school? Is there much change in a child between the ages of 2 and 3?

Have you read or heard of studies about prematurity and education, prematurity and its relation to holding back children from starting school?

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Natasha lives in Chengdu, China with her husband Maher. She is mum of twins Leila and Rahul, and was an Ashtanga Yoga teacher until her little yogis became the teachers. You can find more of her thoughts and stories at Our Little Yogis. http://natashadevalia.com