Helping My Children Cope with Grownup Challenges

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Categories Grief, Loss, Parenting, School-Age, Talking to KidsTags 6 Comments

7-year-olds have to cope with the sudden death of the therapist who was helping them navigate their parents' divorce.

Those of you who’ve been reading this blog regularly for a while know that my family has been through a lot in the last couple of years. We moved across the state; the girls started kindergarten in a town where they knew no one; they skipped up to first grade midyear; my ex and I suddenly divorced; the girls and I moved back home but to a new house and new school; my ex remarried and added two stepsisters to the mix along with stepmom within 8 months of the divorce.

The girls’ school has been an amazing source of support and solace during all this upheaval. In addition to gifted and deeply committed teachers, the school counselors have been nothing short of stellar. They even host a program called Divorce Club in which all children from divorced families can participate. It really helped my daughters, now aged 7, realize that they weren’t alone in the world of separated parents and blended families.

As a result of Divorce Club, my daughters felt especially close to their counselors. J, in particular, sought them out with some regularity to talk through the things that were on her mind. At the end of last year, the school counselors suggested that I consider getting my daughters into play therapy. While they were remarkably well-adjusted, they had been through an awful lot, and the two school counselors had to spread themselves among the 800+ children at school.

I didn’t end up getting my daughters into therapy until last month. Things were just too hectic over the summer and the first, highly recommended, therapist I tried to contact never returned my calls. When this school year started, one of the school therapists had moved to a different school district and the other was approaching maternity leave, so it seemed like an excellent time to find my daughters someone else they felt comfortable sharing their worries with.

We found a lovely counselor we all liked. At our first appointment, the three of us went in together and chatted. The girls were given paper and crayons and allowed to play freely, snack on doughnut holes, and play with the therapy dog. The therapist asked them why we were there. M wasn’t sure. J said it was because of the divorce. The therapist asked whether they worried about Mommy. They looked at her blankly. The therapist asked what Mommy did for fun. The girls agreed that I played on my computer. She asked them what they thought about the divorce. M thought that having a stepmother and stepsisters was great. J said she missed her Daddy.

During the next session, the therapist shared her impressions of the girls and their needs, since the girlies weren’t willing yet to talk to her without me there. I’d done a great job, she told me, but she worried that J was ready to write Daddy off completely and M may have already done so. She asked whether they were in the school’s gifted program, since they were clearly intellectually and verbally precocious. She would like to meet with the girls together and separately so they weren’t answering for each other and feeding off each other so much. She had me list Daddy’s combat history for context.

In our third session, I met with the therapist without the girls, while they went and drew pictures with her assistant and the therapy dog. I was able to share my concerns openly and honestly without fearing that I was imposing my worries or perspectives on the girls. The therapist told me that she felt that both my daughters had a lot of loss to process. She would help them grieve in as constructive a way as possible.

She cancelled our next appointment because her children had come into town with her grandkids to surprise her for her birthday.

When we went in for the next appointment, there was a note on the door. All her appointments were cancelled for the foreseeable future. There was a phone number to call, but it wasn’t hers. “Strange,” I thought, and pulled out my phone to transcribe the number.

A woman in an adjoining office poked her head out. “She died,” she told me helpfully.

“What?”

“She went to the hospital Monday. She died.”

J began to cry and I picked her up and held her. I pulled M to me. I asked them what they wanted to do. J wasn’t ready to leave. She told me that she felt close to her therapist in her office, so we went and sat in her waiting room for about 15 minutes and snuggled. J wanted to visit her office and I let her. She was ready to go outside.

We stood by the little pond nearby and talked for another 15 minutes. I tried to draw M out, but she was clearly more worried about her sister than the therapist or herself. J pondered the concept of fairness. She thought about all her loved ones (mostly pets, ours and friends’) who had died. M tried to comfort her with talk of Heaven, but J explained that it wasn’t much help. She was mad that she was so young and was going to have to wait so very long to die and see people she cared about in Heaven.

It turned out that J had been doubting the existence of God for a few months, thanks to overhearing disagreements in Biblical interpretation and pondering the existence of different religions. I told her that religious belief was a choice. She had to choose for herself what to believe. I wished I could just tell her what was to be believed, but I couldn’t do so honestly. I’m an atheist and she knows it. Finally, I told her that I believed in love. It wasn’t rational or sensible, but it was something I believed in with all my being. That comforted her.

“I believe in love too, Mommy. And God is love. So I believe in God.”

That will tide her over for now. We went into town and got Amy’s ice cream, the ultimate comfort food.

Now both J and M have yet another loss to deal with. J says she’s not ready to find another counselor. I called the school and let both the teachers and the substitute counselors know what had happened.

I’m just waiting for M to explode in anger, as she does at times like this. It’ll be within the next week, I think, and then we’ll find out what she’s been feeling.

What do you do when you have to help your children cope with adult emotions?

Sadia (rhymes with Nadia) has been coordinating How Do You Do It? since late 2012. She is the divorced mother of 7-year-old monozygotic twins, M and J. She lives with them and their 3 cats in the Austin, TX suburbs and works full time as a business analyst. She retired her personal blog, Double the Fun, when the girls entered elementary school and also blogs at Adoption.com and Multicultural Mothering.

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Sad/Happy

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Categories Emotion, Grief, Joy, Medical, Parenting, PregnancyTags , , , 7 Comments

I am 36 weeks pregnant. I have had a very healthy pregnancy, despite the concerns over us having twins. I see my OB and a high-risk doctor, and I have fantastic care with both offices. I have beaten the odds. My babies are doing great. I should be happy 100% of the time. I should be. When I think about my babies, I am. When I think about the struggles that so many others are going through, I just can’t be 100% happy.

Last Monday, we went in for our 35 week scan. The nurses looked at us in amazement as they looked at the ultrasounds. Heartbeats are perfect. Amniotic fluid is perfect. Both babies are practicing breathing. Then they hook me up to the monitors for 20 minutes to check their heartbeats further (to make sure they are raising and lowering as the babies move). The babies pass the NST (non-stress test) within minutes, although they keep me hooked up for the full 20 minutes anyway. The nurses can’t believe how successful a pregnancy I am having. Seriously, they stare at us because here we are at the HIGH RISK DOCTOR and we are showing signs that we are passing with flying colors. Last week, our doctor used the terms “gorgeous babies” and “hitting it out of the ballpark.” We are thrilled. They are sad that I am not delivering at their hospital, because they all want to come visit us. They are happy with our fairy-tale pregnancy, as I’m sure they don’t see many being a high-risk office.

I know that others are hurting, and it pulls me out of this dream land that I’m in. I really struggle with this mix of happiness and devastation.

My grandfather passed away last summer, and his twin brother passed away 6 months later, in February. To say that I was sad is an understatement. I had to learn how to function again without my grandfather. At least I had his twin brother as my surrogate. Losing him hurt in an entirely new way. The very next month, however, I got pregnant with our twins. Our family was in the depths of grief, yet my pregnancy and the idea of new life gave a bit of light, hope, help to recover out of the dark times.

positiveIt seems like life has a funny way of doing this. We are faced with horrific situations. Then something wonderful happens. Maybe not to us, but maybe to someone around us. It provides just a bit of light. It allows us to feel like maybe there is something positive that can happen in our lives too.

Maybe we are in such a dark place that we just can’t see it. We don’t want to see it. We aren’t ready to see it. That’s okay too. We will see the light when we are ready to. Until then, it’s okay.

Does that mean that those of us that have been privy to the light shouldn’t revel in it? I don’t know. I struggle with this daily. I want to be thrilled. And when I think of my babies, I really am thrilled. I can’t think of anything happier. But I do think of the sadness that others are feeling, and I do forget about my babies and my happiness. I do grieve. I do cry. I do want to be in that dark place too. But right now, I can’t. Right now, I have to be a mother and give these babies the best chance they can get. And that is by providing them a happy, light-filled surrounding for them to be born into.

Did I pay attention to the election this year? No, because I didn’t want to be brought down by the negative campaigns.

Do I watch the news about the devastation from the typhoon? No, as I can’t bear to hear about the loss of life as I am about to bring in two lives myself.

Can I bear to even watch Grey’s Anatomy? Barely, as I just can’t allow myself to witness that tear-jerker (even though I know they are only actors on a fictional TV show).

It doesn’t mean I don’t know they are happening. I know they are. I’m not completely shut off from the world. I know there is suffering. I know that so many friends and loved ones are suffering. So what do I do? Do I let myself be sad right now? Do I let myself be happy? Can I be both? I try to do both, and I struggle. I really do struggle. I wish I could just be 100% happy right now. I want to be for my two babies.

Life has both awful and glorious moments. If it were all terrible, we wouldn’t have a reason to face another day. If it were all incredible, we wouldn’t understand how magnificent those special moments are. Right now, my “job” is to provide a light-filled moment. I hide my achy back and sore hips. I take a shower every morning, straighten my hair, and sometimes even put on some makeup. I put on a big smile and am grateful for the gift of these babies that I have been given. I will provide the brightness for those around me, if they want it. It doesn’t mean that I am not struggling inside. I doesn’t mean that I am not hurting for them. I just know that I have allowed myself into that dark spot other times in my life. Now is my turn to help give relief to those that need it.

*You can read more about Dory on her family blog, “Doyle Dispatch.” To read more posts about Dory’s pregnancy and nursery decorating on her blog, you can see the list here.*

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Triplets?! Angela’s Story of Love and Loss

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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.

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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…

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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

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Special Needs in the NICU

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Categories Anger, Congenital Anomaly, Emotion, Fear, Feeling Overwhelmed, Grief, Health, Love, Medical, Mommy Issues, NICU, Parenting, Special Needs, Theme Week, Unique needsTags , , , , , 2 Comments

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.


Throughout my pregnancy, I knew premature delivery was possible, perhaps even likely. I read up on prematurity and the NICU. I was on bed rest for 12 weeks, and had access to the internet, after all. I thought I knew, more or less, what to expect from a NICU stay, especially as my pregnancy stretched into that “they’ll probably be just fine” stage after the magical 28th week.

I did not know, did not even suspect, what was in store for us. It took me a very long time to grasp it. In fact, I still may not fully comprehend things.

There is a whole other side to the NICU. Not just premature babies go there. Other babies, who may have been full term, end up there for various reasons. Whether by coincidence or by design (I never quite asked), our children’s hospital had an entire room (at least one) full of these babies, and that was where my Mr. A was transferred on his 15th day of life.

On his first day, and all the days leading up to it, I had no clue. He was measuring small, but doing fine. His anatomy scan was perfect. Our first trimester screenings—while not fully reliable for twins—were perfect. What they did not detect was undetectable: a cleft soft palate, dysgenesis of the corpus callosum, malrotated intestines, tracheomalacia, and other issues that, for his privacy, will remain undiscussed. At the root, a so-tiny and yet so-significant missing chunk of DNA. We did not find all this out on the first day, first week, or even first month. And we are not alone in this.

With a typical premature baby, of course there is no set path, and no guarantee. But with a special needs baby, especially one with a rare diagnoses, there’s even less. Every exam might have another pitfall. And when your baby is early and/or very small, as our Mr. A was, that’s all there is. The bad news just keeps coming, and they can’t do anything to fix it until he is bigger, if at all.

It is frightening. It is lonely. It is so very lonely. When you converse with parents of typical preemies, they cannot understand why your baby is doing so poorly. Conversations with parents of other medically complex babies are equally challenging: you are all new to this. “Oh, your baby’s heart is a mess? My son’s is just fine, but they want to give him a tracheostomy. What do you think I should do?”

specialneedsnicu

Conversations with doctors and nurses can be equally frustrating. Most of them, I have found, do not want to hurt your feelings. They might find refuge in medical terminology, they might be evasive, they might conceal information about your child’s health because they don’t want to overwhelm you. Worst of all, they may write you off completely, believing that your child is not worthy of their time and energy. All of these happened to us during our NICU stay.

When A was born, he did not have a gag reflex. I asked the neonatologist what that might mean for him, aside from the obvious. Her reply? “Oh, some sort of midline nervous issue,” and she walked away.

The doctor who gave us A’s diagnoses refused to answer any questions, saying, “But really, who can predict. My own son has learning disabilities. You never know.” We were not asking what his grades would be in 3rd grade, we were asking “But what does all this missing DNA mean?” The information pamphlet he handed to us (upside down, slid across the counter, like some sort of dirty secret) was printed entirely out of order and contained information on every known issue with deletions on the long arm of Chromosome 2, meaning not all of it applied to our son and much of it was conflicting. There were no page numbers and the printing cut off photos and such, so we were unable to piece it together and finally found it on the internet after we’d gone home. I don’t think the printing was intentional, but I do think he did not even glance at it and did not want to tell us anything it said.

A doctor, two weeks following A’s major abdominal surgery, told me he didn’t think A would ever be on full feeds, “because of his syndrome.” When I said he had been on full feeds (by tube) prior to the operation, the doctor at first refused to believe me, and then said, “Well, sometimes kids with syndromes just get worse.” My rage following that conversation ensured that that doctor never treated my son again.

Our underlying question, that I was only ever able to voice once, was: “Is all this worth it? Am I torturing my son for no reason? Should we just let him go? What will his quality of life be? Will he ever be happy?” The doctor I asked this to simply said, “Well, will your other son ever be happy?” To have asked the question that tormented my soul and to receive such a side-step of a response silenced me. I decided right then that, unless anyone flat-out told me that A was going to die, he would not die. He would be happy and just fine, thank you. (While it turns out that this is more or less the case, I was extremely angry to discover, by reading his medical records and asking more pointed questions of some of his doctors and therapists, now that I am in a more stable place myself, that very few people expected A to live to see his first birthday. The fact that no one, not a single person, prepared me for this is something I cannot forgive, even though it did not come to pass.)

This post is rambling. I have attempted to fix it numerous times. I simply can’t. The reality of having a child with complex medical needs in the NICU is overwhelming and, frankly, incomprehensible to live, and it appears that writing about it is the same.

The second piece of this all is the second baby. I was dealing with this and another newborn. At first, I could not distinguish things in my mind. That doctors seemed so fearful and pessimistic about A led me to feel that both my boys were at risk. No one ever called D a “feeder/grower”, no one ever said, “This little man will be just fine.” I was not well-versed enough in preemie-land to understand. Neither could eat, neither could maintain their temperatures, neither was awake for more than a few minutes at a time. I was as nervous making my post-pump midnight, 3, and 5 am calls to the NICU when asking about D as I was about A. Eventually it became clear to me that D was doing well and would be coming home soon. I did not realize how long of a road A had ahead of him (as their birth hospital, despite having a Level III NICU, could not do the imaging tests we needed, much less the surgeries). I’m glad of that. It allowed me to feel joy at D’s gains as well as A’s much smaller ones. I did feel a fundamental sense of wrongness when we took D home, leaving A there by himself…but I’d felt the same way upon my own discharge, leaving both my boys behind.

A was transferred the day after D came home. They’d kept him there as a kindness to us, but also because, really, nothing was so urgent that anyone would risk doing anything to such a small and fragile baby. He would have been doing the same things—trying to get bigger and stronger in order to face the upcoming challenges—at the children’s hospital, so there was no need to move him. But with one baby at home and one baby in a further (though still relatively close) NICU, life became even more complicated. D could not visit A. No baby can ever go back to the NICU (at least at our hospital) once they’ve left, because the risk of their “outside germs” infecting the delicate babies in the NICU is simply too great. I understand that. But it meant that, not only were my heart, body, and milk-containing breasts torn into two locations, I had to find babysitters. My husband needed to save his FML time for surgeries, scary times, and A’s homecoming. (We did not save nearly enough, but we did not know.) I had to leave D with my mother or grandmother, and A with his nurses. It was awful. It was exhausting. Pumping every 3 hours for A, who could not eat, and trying to establish breastfeeding with D (which I could not fully do until A came home), etc.

D came home when they were 14 days old. A came home on April Fool’s Day, after several false starts that made us unable to believe he was coming home until we were in the car. That was their 62nd day of life. 48 days apart. 48 days of driving from one place to another, always missing one baby, always feeling like I was failing both. I was so glad to close the door on that.

Of course, the other thing about a child like A is, that door never closes (until it is slammed shut for good, which is too horrifying to think about). I did not know it at the time, but ten days later, A would be back in intensive care. But it would be the PICU, then and again and again and again. Our NICU journey, at least, was behind us.

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Let’s Talk About SIDS, Baby

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Categories Fear, Infants, Loss, Medical, Theme WeekTags , 1 Comment

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.


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Image courtesy of the Safe to Sleep® campaign, for educational purposes only; Eunice Kennedy Shriver National Institute of Child Health and Human Development, http://safetosleep.nichd.nih.gov; Safe to Sleep® is a registered trademark of the U.S. Department of Health and Human Services.

SIDS (sudden infant death syndrome) is the monster under the bed, the ax murderer hiding in the shadows, all of my nightmares made real. SIDS is the diagnosis used when an infant dies without warning. The child is alive and healthy and then she’s gone.

SIDS is something of a controversial diagnosis, since it’s a catch-all for cases where no other explanation can be found. As with many conditions, our medical understanding is constantly evolving. NPR ran a story a few years ago arguing that SIDS deaths are almost all avoidable suffocation deaths in which the diagnosis is an act of compassion to the caregivers.

Premature and low birthweight babies are at higher risk for SIDS than full-term normal weight babies. The irrational fear during my pregnancy that my children were conjoined twins was replaced by the slightly more rational fear that I would lose one or both to SIDS. It certainly didn’t help when a coworker of my mother-in-law did, in fact, lose a grandchild (a twin, even) to SIDS when my girls were a few months old.

I did my research and did what I could to reduce my daughters risk of dying from SIDS.

  • During my pregnancy, I avoided smokers. I’ve never so much as touched a cigarette, but I wouldn’t allow them anywhere near me while I was pregnant. It helps that Austin doesn’t allow indoor smoking and my employer was on its way to becoming the smoke-free campus it is now.
  • I laid the babies on their backs to sleep. Stomach and side sleeping in infants too young to roll over has been shown to increase the risk of SIDS deaths.
  • I used firm crib mattresses with tightly fitting mattress pads and sheets. My arm muscles did some major work wrestling those sheets on.
  • I didn’t co-sleep. Don’t get me wrong; I occasionally fell asleep while nursing in a side-lying position, but I returned the babies to their cribs when they were full. Keeping their crib in my room worked out really well until after they weaned. They slept in a crib together, though.
  • There were no pillows, blankets, bumpers or toys in their cribs. They kept warm in footie pajamas and sleep sacks that couldn’t bunch up around their faces and present a suffocation risk.
  • The cats were not allowed in the nursery or my bedroom until the girls outweighed them, by which time J and M were cruising and talking.

I also did my share of irrational worrying. I kept the baby monitor on high enough that I could hear both babies breathing. I could tell their breaths apart, and any time I imagined a missed breath or two, I ran to their room to check on them. During the time from first rolling over until both babies were expert rollers over, I slept on the floor next to their cribs. Any time one of them flipped onto her stomach, I rolled her back over to her back. J wasn’t  much a fan of this arrangement, but she had to put up with it until I was confident she could consistently and confidently move her head to the side to catch her breath during tummy time.

A mom of premature twins talks about sudden infant death syndromeWas I an overprotective new mother? Absolutely. And I don’t apologize for it. SIDS happens. I just won’t let it happen to my babies… or yours.

Want to know more? Check out this brochure ☮  from the Eunice Kennedy Shriver National Institute of Child Health and Human Development and its Safe to Sleep Campaign.

Sadia (rhymes with Nadia) has been coordinating How Do You Do It? since late 2012. She is the divorced mother of 7-year-old monozygotic twins, M and J. She lives with them and their 3 cats in the Austin, TX suburbs and works full time as a business analyst. She retired her personal blog, Double the Fun, when the girls entered elementary school and also blogs at Adoption.com and Multicultural Mothering.

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Multiple Feelings When Your Multiples Are in the NICU

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Categories Birth Stories, Emotion, Grief, Guilt, NICU, Parenting, Prematurity, Theme WeekTags 4 Comments

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.


The first day I was a mother, I believed that I had already failed in the role.

Unable to get pregnant without the intervention of science, and unable to give birth without the doctors cutting me open and extracting the babies, my one job as an expectant mother had been to keep my twins nestled firmly and warmly in my womb.

At 33 weeks, I began preterm labor due to preeclampsia. When the decision was made to have an emergency c-section, I burst out sobbing. I had always been healthy; never had any hospitalizations; and, I really believed that the issues facing my pregnancy were ones that happened to other people, not to me.

In my mind, I had somehow failed my one, and most important, job.

After being bundled tightly in their blankets and posing for a quick picture in front of my head, Marc (4.5 pounds) and Maddie (3.4 pounds) were rushed to the Neonatal Intensive Care Unit.

Marc in the NICU

Under the ominous, and yet miraculous for women with preeclampsia, drug, magnesium, I was unable to get out of my bed or even see my babies for over 24 hours. I remember waking up the next morning in a horrible magnesium fog and not remembering what we had named our daughter. When one of the neonatologists came into to my recovery room to report that Marc’s lung had collapsed and he needed to be intubated, I couldn’t process what she was saying and I couldn’t remember my husband’s cell phone number to tell him to come to the hospital. The failures seemed to continue to pile up.

Meeting my babies for the first timeEven when I was able to see the babies, I felt so disconnected from them. I wasn’t able to hold them—or do anything for them. I felt like an outsider—like it didn’t really matter if I was their mother or not. I remember telling Scott that the babies were more his than mine. He had spent more time with them; he had already developed a rapport with the nurses; he seemed to know what was going on.

Endless Wires

Those first horrible days were nothing like what I had imagined their birth would be like. Without family around or a mothers-of-multiples support group, no one was able to help me navigate through those feelings of overwhelming guilt, helplessness, and disconnect that accompanied those days.

DSC01748And, while the emotional rawness of that time has been smoothed away, the trauma of those first few days still resonates with me. When I asked moms in my San Antonio Mothers of Multiples group what their feelings were when their babies where in the NICU, I was surprised at the emotion that erupted, even from mothers whose children were now in their teens.

  1. Out of control or helpless: Christina, mother to b/g twins described feeling out of control, “…like I was a nuisance for wanting to come and nurse him and hold him.” The mother often feels like she takes back seat to caring for her babies.
  2. Mourning the loss of the imagined delivery: We all imagine how the birth of our children will occur. When it doesn’t go like that, there is an incredible sense of loss or disillusionment. In some way we feel we were cheated out of a genuine experience. One mother, whose twins were born at 27 weeks, 5 days wrote, “I don’t know why I assumed that I would have the birth I wanted—naturally at 38 weeks and they would be fine and healthy and go right home with me.” She writes that even a year later, “I still feel cheated from the whole new mom experience—I didn’t get to hold any of my babies after they were born; I didn’t see them until hours later; a nurse gave them their first bath; their first bottle.”
  3. Shock: “It was only on delivery day that anyone even started talking to me about the NICU and that they would have to go there…the first time I went in there was a few hours after delivery. It was just bizarre. All those teeny tiny robo-babies hooked up to various machines and wires.”
  4. Relief: A couple of moms wrote that they were relieved that their babies were in the NICU. “I was in no condition to take care of my babies,” wrote one mother of twins. “I needed to heal myself, and I knew they were in good hands.”
  5. Guilt: Almost all of the mothers expressed feelings of guilt, constantly reexamining what they might have done to have caused premature births or birth defects. Sara, a mother of b/g twins whose daughter was born with her esophagus from her throat growing nowhere and her esophagus from her stomach growing into her trachea, wrote,“Some days I could emotionally handle seeing her attached to what seemed like a bazillion tubes and listen to the breathing stridor; some days not. Once I came out of the morphine/Vicodin induced haze [from her C-section], I started wondering what I did wrong, reading medical journals about when that particular defect manifests itself. Then, I started wondering if it was because, before I knew I was pregnant, I had a margarita in an airport around 11 am and had a daiquiri that night around 8 pm… On an intellectual level, I knew it was not my fault.”
  6. Powerless:  A couple of mothers talked about how difficult it was to get their babies out of the NICU. One mother wrote how, “you can’t be blind to the reality that all pregnancies and births have risk and sometimes babies that seem to be perfectly normal may need some extra help from the NICU.” She goes on to write how important it is to have “… an advocate, whether that is a doctor, family member or friend who will help you fight for what you believe to be right.”

Did you have these feelings when your multiples were in the NICU? Other feelings?

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NICU Names: Guilt, Anger, Sorrow

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Categories Anger, Emotion, Fear, Frustration, Grief, Guilt, Mommy Issues, NICU, Parenting, Prematurity, Theme WeekTags , , , , 4 Comments

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.

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Of Closure and Remembrance

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Categories Grief, Loss2 Comments

I didn’t expect that my first post as a contributor with the HDYDI family would be one about loss but it is. You see, before I knew the joy of being a mother, I experienced the pain of losing a child. As part of the National Pregnancy and Infant Loss Awareness Loss Day I want to share with you my path of closure and remembrance.

On 2008 Christmas eve, Santa outdid himself. After 3 years of trying to conceive, I had a positive pregnancy test. Life became really surreal for me and I’m not sure my feet touched the ground in those first weeks of finding out that I was pregnant. Once my first trimester was over, I made the big announcement – WE’RE HAVING A BABY. I could exhale. We’ve made it through the riskiest part of being pregnant. It was time to start picking out names and furniture and cute baby clothes.

The next day, the proverbial shoe dropped – I started bleeding heavily. The doctors confirmed that I had a twin molar pregnancy. Molar pregnancies occur 1 in 100,000 pregnancies. A twin molar pregnancy with a coexisting normal fetus is even rarer. So that’s what I had – one normal perfect fetus and one mole with potentially fatal consequences. 3 weeks later, I had a miscarriage. While waiting to be seen by the doctor, I went to the restroom  and that’s where my little boy was born – 16w2d – perfect in every way but too tiny to live.

Recovery was hard. On the day of my miscarriage, my beta Hcg was over 2 million. I spent the two days in the hospital before I could go home. I had difficulty breathing, my blood pressure was very high and my thyroid hormone levels were so low that my body had the jitters and I was having heart palpitations. It took 6 months of monitoring by the MFM and gynecologist oncologist before my body was back to normal. It was another 6 months before my hearth was ready to try again.

Remembrance

I made a remembrance bracelet for my son and wore it for a year afterwards – until the day I didn’t feel guilty about taking it off. When I got pregnant with my twins, I didn’t inform my family until the pregnancy was 36 weeks. I refused all ultrasound photos. I had already amassed a collection of ultrasound pictures with no baby to show for it. I was scared to lose again

But this time, I didn’t lose. My beautiful baby girls were born at 39 weeks. After their birth, my sister came to help out and she saw my son’s teddy bear and bracelet in the closet where I kept them. She asked why I still kept it, assuming that part of closure was that I got rid of everything related to what was a tragic event. I smiled and said nothing. She didn’t understand and that was ok with me. Sometimes people who truly love you may still not get it. Let it be ok.

To a lot of people, a 16 week old pregnancy is just a blip on the radar. To a mother, it’s a little person that’s managed to grab a hold of your heart before you ever met. Yes the miscarriage is among the worst moments of my life. I could never erase the memories if I tried. But I also have good memories – memories of a very boisterous little boy who liked to give the ultrasound techs a run for their money. In just 16 weeks, I fell in love with him and that love is still strong. I still miss the way things could have been. Yes I have closure but I will always remember.

Have you been in a place of loss before? What would you say or do for a mother who’s experienced infant or pregnancy loss to honor their angel?

Yetunde has 3 year old twin girls and dishes about her experiences on the blog aptly titled mytwintopia.

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Helping a MOM through the Loss of a Multiple

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Helping a MOM through the Loss of a Multiple

With October being National Pregnancy & Infant Loss Awareness Month, I wanted to take a moment to share with you something that you may not have given much thought to.

Miscarriages happen. Stillbirths happen. And the loss of an infant happens. It’s hard no matter who or when or how it happens. It’s hard.

But there is an interesting situation that arises when the loss occurs in a multiple pregnancy or birth. When one of our own experiences the loss of a multiple.

Twins become a singleton, no longer unique, no longer even in the multiples club. A twinless twin.

Triplets become twins. Still multiples, but with a missing piece. Or even worse, if two of the three are lost, this mom would be like the twin mom that lost one.

Reflection of a Lost Twin

And what do you do? Because the triplets aren’t twins; the twin was and always will be a twin. How does this mom of multiples get over the fact that society will never see them as they truly are? That even their own kind – other moms of multiples – will still refer to their children by the wrong descriptor?

It’s an added sting, and I urge you to do something to help ease the pain of your fellow moms of multiples who may not appear to be what they are.

The mention of my child’s name may bring tears to my eyes, but it never fails to bring music to my ears. If you are really my friend, let me hear the beautiful music of his name. It soothes my broken heart and sings to my soul. ~Unknown

If you meet someone and don’t know their situation, you’ll see twins when there were actually three. That’s ok. IF you are diligent about referring to them in the future as the mom would like them to be – for me, mine are NOT twins. They’re surviving triplets. And let me tell you, if you know my story, and you still call them twins, we’re going to have issues…

That’s because I’ve encountered this exact situation from my own moms of multiples group. I choose to keep Carter’s name on my nametag as one of my children, and I put an angel halo above his name to show that he is no longer with us. Do you know that I had members of the group question why I had to do that? They felt that new members wouldn’t understand and would only see twins, so I should just go with twins.

No. I will not do that. And the best thing you can do as a fellow mom in the moms of multiples club is to respect my wishes, whether it makes you uncomfortable or not.

Mom Loses Child and Prays for Them

Not every mom will feel the way I do, so that’s why I say to just make sure you are aware of what each specific mom wants, because it will be different in each situaiton.

Yes, there are other losses to remember this month, but my goal with this post was to hopefully share how you can better relate to the moms that have experienced the loss of one or more of their multiples.

Please take a moment to let this soak in. If you know someone who has lost a multiple, please let them know they’ll always be a mom of twins (or triplets or whatever fits their situation). Include them in your activities accordingly (ex: I am included in triplet play dates as well as twin ones, because I have expresed that it’s important to me to stay connected to the fact that I have triplets – one just isn’t able to be with me.)

And if you’re able to – give your mom friend a hug. She could probably use it.

Do you know a MOM that has lost one or more of her multiples? How have you made them feel included?

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Monday MoM Blog Picks

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Categories Gender, Infertility, Loss, Monday MoM Blog Picks, Parenting1 Comment

Diana Wrote: Again

http://dianawrote.comDiana Wrote used to be Hormonal Imbalances. I mentioned Diana’s newborn son Kaden’s health challenges in my Monday MoM Blog Picks last month. I’m sorry to report that in Again, Diana writes about the loss of a third son, only 3 weeks old. In a subsequent post, Finding Comfort After Loss, she talks about how there is no right way to grieve, just as there is no right way to parent twins, as Janna wrote about earlier today.

Twiniversity: My Road from PCOS to Twins

http://www.twiniversity.comYes, we get frustrated with the constant question, “Are they natural?” Let’s be honest, though. While some of us are blessed with spontaneous multiples, infertility is a reality in the MoM community. In this post, Michelle Cleary talks about Polycystic Ovary Syndrome (PCOS) as a reality in her everyday life, not just as a medical condition known to us only in the third person from medical journals. Michelle describes her post best: “I’ll tell you the medical meaning, but then I’m going to tell you my story and how I live with it every day. You’ll see how different the two really are.” Michelle’s girl/boy twins are now 4 years old.

Talk About Twins: What I Want My Boys to Know About Girls

talkabouttwinsChristina Baglivi Tinglof writes at Talk About Twins and is the mother of 3 teenage boys, twins and a singleton. In this post, she jumps into the pool of thoughtful parents responding to Miley Cyrus’ questionable display to discuss how to raise her boys to be good men in today’s world.

 

What have you read in the blogosphere this week that the HDYDI community should check out?

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