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?”

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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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They’re Still Twins

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Categories Balance, Community, Difference, Friendships with Other Multiples, Parenting, Relationships, Special NeedsTags , , , 6 Comments

During pregnancy, my husband and I had many conversations about all the things we would do for our twins to let them know they were loved and valued as separate individuals, not just half of a set. That they cohabited in utero was only a very small part of who they would become, and we wanted them to always know that.

I dealt with all the comments during pregnancy—the “better you than me”, the “double trouble”, the “my cousin’s neighbor has twins”, the “I always wanted twins” (or, bizarrely to me once: “I almost had twins”…a story which did not result in the loss of a twin, but rather a woman who, prior to ultrasound technology, knew all along she was having twins, but never heard two distinct heartbeats and only delivered one baby). I joined twin groups, mentally prepared myself for the barrage of twin-comments we’d receive everywhere we went.

I never imagined how much it would sting to lose that.

I am luckier than many in the twin world: both my twins are alive and thriving.

But.

They do not reach developmental milestones within days of each other. Not even within months. They do not wear the same size of clothing, and haven’t since D outgrew the preemie size (while A was still a 3-pounder, outfits hanging on him like Doby’s pillowcase). They will probably not be in the same class at school (except perhaps preschool). Strangers do not ask me if they’re identical or fraternal, or even “Are they twins?” They ask me, “How far apart are they?”

The first time I got that question, the boys were 9 months. Now, D quickly outgrew the “adjusted” charts and was over 50% in height quite early, and has been slower but always on-the-charts in weight. Even so, he looked at most 11 months old. With A, who yes, (yes, believe it or not, I know), is small. But at 9 months, he looked perhaps 4 months, but probably closer to 5. Just what gestational length did these questioners have in mind, anyway??

But now, at 16 months, D could easily pass for 2. And A could be a tall-but-skinny (95th and below-zero) 9-month-old. Which is probably about where he is developmentally as well. The question is no longer absurd.

And it hurts. Selfishly, it hurts, as it is not what I imagined. It is not what “twins” entails in popular culture, mythology, anyone’s mind. But it also hurts for them. They are and always will be brothers, but I feel like they each are missing that twin-thing: the sharing of clothes, sharing of friends, sharing school books, mastering new skills together.

I rarely comment in my twin group. I feel like so much of it just does not apply.

A lot of it does, though. A lot of it applies, and then some. Feeding twins is so hard! Feeding twins when one of them has a feeding tube? Even harder. Getting any sleep with twins is hard! Getting any sleep with twins when one of them has several alarms hooked up to him, which give both real and (thankfully) not-real alerts? Harder. Dealing with extended family who plays favorites? Whoooo, boy, let me tell you. Finding time to {x}? You get the picture.

A and D will never know a different life. As brilliant as they are, I highly doubt either of them pondered the concepts of twinhood while womb-mates, probably not even recognizing that other kicky-squirmy creature with a heartbeat from my own intestines. They are twins, and this is what twinhood will mean to them, even when they understand that it may not hold true for the greater world. In some ways, they are wiser than I am.

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Pride and Joy

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Categories Balance, Congenital Anomaly, Difference, Fraternal, Medical, Perspective, Special NeedsTags , , , 6 Comments

This is not the introductory post I had planned on writing. Then again, very few things in the past 15 months have gone according to plan, so, here we are.

We are attempting to reduce the number of bottles Mr. D drinks. He day-weaned months and months ago, lacking the patience to sit still at my breast. But he will carry a bottle with him all day, taking sips here and there, if we let him. Dire warnings of ruined mouth and teeth from our pediatrician have us taking action: he only gets bottles at naps and bedtime (and in cases of emergency).

“Ba-ba?” he asks.

“No, sweetheart, you only get bottles when you go night-night. Would you like a cup of water?”

“Ba-ba!”

“Only at night time.”

“Nigh-nigh!” He takes off, down the hall, towards our room. (Our as in mine and his father’s…but yes, we co-sleep, like the push-over, sleep-deprived parents we are.)

“Mister, it’s only 5:30, there’s no way you’re tired. Why don’t you come play with your house?”

“Nigh-nigh!!”

I follow him. He is climbing onto the bed. He lays down, rolls around, puts his bum in the air, then raises his head, looks at me, and triumphantly declares:

“Nigh-nigh!” (Long pause…) “Ba-ba?”

I scoop my deceitful, manipulative little man up into my arms. Trying to pull one over on me, at such a tender age (and with such a limited vocabulary)! How could this little creature, who didn’t even exist two years ago, have so much knowledge of the world?

And I think: could ever a mother be more proud of her son?

I attempt to relay this little story to my husband, by text-message. Phone reception in the Pediatric Intensive Care Unit at the children’s hospital is terrible, pretty much non-existent. But this is far from our first PICU stay, and we have learned that iPhones can somehow get text messages (even from non-smart-phones!) over the internet, and there is wireless access through-out the hospital. My husband is there with Mr. A, though he and I will soon be trading places.

A simple cold left both boys with runny noses, and then Mr. D got better and Mr. A did not. Our pediatrician suspected a sinus infection (not his first), but when the ten-day course of antibiotics was done, he was worse. The pediatrician-on-call for the day (because of course it was Saturday), suspected his recently repaired palate was infected. I filled another prescription, gave him the first dose, and put him down for his nap. He woke up, vomited blood. I pulled his remaining stomach contains back into a syringe via his G-tube: they were bloody. I put them in a small Tupperware container, changed his diaper (poop looked weird, so I bagged that, too), and took him (and his ‘samples’) to the ER, leaving Mr. D with my mother.

I watched them working on my son (it never gets any easier). They wanted to intubate him; I was able to buy a reprieve and repeat blood-gas, which showed that to be unnecessary. I spouted off his medical history better than I ever could my own: dates of hospitalizations, surgeries, tube placements; pertinent findings from swallow studies, sleep studies, upper- and lower-GI studies, MRIs, echoes, everything. And the underlying root of it all: a deletion on the long arm of Chromosome 2.

“Which specific deletion?” asked the attending, and I told her. She nodded sagely, losing my respect. She’d never heard of his deletion, I knew. Which is fine, but be honest with me, as my son’s life is in your hands. She would leave the room and attempt to Google Mr. A’s syndrome, and not find out much. Fewer than 25 cases of similar (and no exact) deletions are known to exist. And, to be perfectly frank, there seems to be not much to say about it except: “This is not good, and will cause lifelong problems. Here is a list of some but not all, of which he may have many.”

We were told awful things: lists of he-will-nevers and he-will-always-needs and the impression that very few people had any faith in Mr. A. But we had held him (after his fourth day of life, once he was stable enough), sang to him, loved him. He was and always will be our first-born, heir to the kingdom, recipient of faith, hope, and love.

It eventually became clear to me—first from suspicions, then from out-right confirmation—that few, if any, had expected him to make it through his first year of life. (That no one bothered to prepare us for this is another post.)

But he has indeed survived. He has blown previous research right out of the water. He is writing his own story, and I get to watch.

This stay was short: 2 nights in the PICU and one on the floor. I bring him home in fine spirits. He wants to stand. I take his hands and help him. He lifts one foot, then the other, walking across the living room with my assistance. A week ago, he would only do this with much prodding and many tears, and now here he is, trying to chase the cat.

And I think: could ever a mother be more proud of her son?

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