Speech Re-Evaluation: All Is Well!

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My twin daughters received speech therapy at age 4 and it made a world of difference in their ability to be understood. When they graduated therapy after a few months, the therapist told me watch out (listen out?) for the development of their /r/s. She didn’t anticipate any issues, but told us that /r/ would be the next thing to look out for. Since English-speaking kids don’t typically develop the /r/ sound for several years, we might notice delays down the road. They had all their other consonants down, although M was still working on a lisp-free /s/.

speechNow that M and J are 7.5 years old, they’re at the age where I anticipated they’d start to have more adult like articulation. When they told me that friends at school were commenting on their accent—they’ve lived here in Texas all their lives—I thought a speech evaluation might be in order. They do odd things like pronounce “shorts” and “shirts” as homonyms, which causes much confusion when we’re getting dressed in the morning.

I contacted the school speech therapist and told her the girls’ history. She is usually called into evaluate kids by teachers, not parents, but she agreed to take a listen. If further evaluations were in order, she could file that paperwork. She was very professional and I appreciated the time and effort she took to set my expectations and explain her process. In her very first email to me, she wrote,

According to our eligibility guidelines, an English /r/ is not typically mastered (i.e. produced correctly by 90% of population) until age 7.5 (based on the Massachusetts Speech and Hearing Association Entrance and Exit Criteria Guidelines), so it would not be considered “significantly delayed” (which is the criteria for school-based therapy) until the age of 8.5 or 9.  For Spanish /r/, the age of mastery is 5 for tap-r and 7 for /rr/.  However, with the girls not being native Spanish speakers, we would not work on Spanish /rr/ in school-based therapy.

After some back and forth to give her official permission to talk to my girls, I received the following email.

I just pulled your girls for a brief conversation in the hallway after their TAG [Talented and Gifted] class. What charming children! So verbal. J has no noticeable sound errors, and M has a slight, developmentally-appropriate distortion of /r/. She is stimulable for /r/, which means that if you show her and tell her how to do it, she is able to be taught. I say, “Pull your lips back like you’re smiling, then pull your tongue waaaay back to the back of your mouth and say RRRRed.” With this type of instruction, she is able to approximate the /r/ sound. This means that she will likely acquire the sound on her own without intervention. At this point I would definitely say that there is nothing to worry about and you should be very proud of your lovely daughters.

Do I feel a little silly about having worried? Yes, I admit that I do . Still, I’m so glad I asked.

I did make a mistake, though. I failed to tell my girls that I’d contacted the speech therapist. When I asked J and M whether they’d enjoyed their chat with her, M told me that she was a little embarrassed. She was worried that I wasn’t proud of her speech. I told her that wasn’t it at all, that I had felt terrible about delaying her evaluation the first time around and that I just wanted an expert to tell me that everything was okay, which is exactly what happened. M was satisfied.

I was reminded that my children are getting older and I need to be ever more transparent about how I advocate for them and talk to them about what I’m thinking and planning.

“She’s so nice,” J volunteered about the speech therapist. “And very beautiful.”

Speech delays are more common with multiples that singletons. A review of studies on the subject indicates that prematurity plays a role in this. A bigger contributor is likely the social realities of being a twin. Twins get less time one-on-one with mom than comparable singletons. Instead, they spend time talking to mom and their twin at the same time. I’ve certainly observed my pair encouraging each other’s speech quirks… like the period a couple of months ago where they were convinced that “velvet” was a colour, what I would call burgundy. I actually had to pull out the dictionary to get them to realize that no one else had any idea what they were talking about.

If you’re wondering about your own child or children’s speech development and how it compares to a typical kid’s, Katie over at Playing with Words 365 has written a clear and complete article describing the range of typical articulation development in English-speaking children.

Have you ever had your children evaluated for their speech development? Been concerned that something might be wrong only to find that everything is fine?

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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Foodie Friday: Suck-Swallow-Breathe

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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.


Almost all preemies have difficulty with feeding, and my boys were certainly no exception. In order to eat, a baby has to be able to suck (at the breast or bottle), swallow, and breathe. But not at the same time, of course, and trying to coordinate that is very difficult.

Mr. D was born with the ability to do all three. He never required oxygen support, could generally swallow what was in his mouth (although he did need “reminding” from time to time), and could hold onto a pacifier, bottle, or my nipple like a pro. What he couldn’t do was figure out how to do all three in such a manner to ingest enough milk to live…especially when he’d rather be sleeping.

D’s challenges were fairly typical for preemies. Eating is hard work. So hard, in fact, that a twenty-minute rule is placed on both breast- and bottle-feeding in most (all?) NICUs: the baby gets 20 minutes to eat all he can, and then is weighed (if breastfeeding) or the amount remaining in the bottle is examined, and the rest of the required meal is poured down the feeding tube. I wanted to breastfeed, but was told we could only attempt it twice a day, as it’s even more work to extract milk from a breast than it is from a bottle.

The first time I breastfed Mr. D, he took me by surprise. He did really great! The lactation consultant warned me that many babies take one or two good feeds from the breast, and then begin to struggle. That was the case for him: he could extract a few drops of colostrum, especially when I pretty much hand-expressed it into his mouth, but once my milk came in, it was beyond him. He would latch on, and then fall asleep.

Suck-swallow-breatheHe didn’t fare much better with the bottle. I was taught how to hold him, how to stroke his cheek or under his chin to “remind” him to swallow, how to burp him, how to tickle his feet when he was nodding off…and he would still only swallow a few milliliters. He would sometimes become fearful of the liquid in his mouth, and hold his breath until I sat him up and helped him to dribble it all out. But mainly he would just look up at me, with an expression of what felt like disdain on his face, and then close his eyes. He held onto the nipple (mine or the bottle’s), but that was it. That was all he wanted to do.

The nurses told me it often happens like a switch—nothing, nothing, nothing, BOOM: eating! That wasn’t the case for Mr. D. Instead, he’d take a few more milliliters each day, most days. What was exceedingly frustrating to me was that, as his weight (from his oral plus tube-feedings) increased and his IV-nutrition was tapered off (to end abruptly when he yanked out his second scalp IV and they couldn’t find better access), his required intake went up, too. He was supposed to eat 23 mls, and would manage 19, and I’d go home to pump in triumph, only to return to discover they’d raised his goal to 26.

But he did improve. He kept getting so close. I felt like we were nearly there. Feeding was the only thing keeping him in the NICU, and I wanted him home.

He developed reflux. My pediatrician tells me “100% of babies have reflux”, and I don’t doubt her. Mr. D’s was worse than some, which again is common with preemies. That muscle at the top of their stomach (cardiac or esophageal sphincter) is as weak as their other muscles, and is forced into doing its job way too soon. One of his day nurses asked me if there was a history of milk intolerance in my family. Yes, there is: I was allergic to milk protein for my first few years of life. She suggested eliminating dairy from my diet, in case Mr. D had the same problem. I did. We also began fortifying his breast milk with soy formula rather than the special preemie formula. (Breast milk has about 20 calories, and it is very common to add formula to it to boost that to 22, 24, or even 27 calories for premature babies, as their tiny stomachs can’t hold enough volume to give them their necessary caloric intake.) I don’t know that it made much difference, but I was willing to try anything.

On his tenth day of life, he pulled out his NG-tube for his tenth (estimated) and final time. He wasn’t meeting his goals, but they decided not to replace it. He did well, getting closer and closer. On his thirteenth day, we were told we could take him home the following day: Valentine’s Day.

At 6 am on V-Day, I got a call from the neonatologist. She was just coming on shift having been gone a few days, and she didn’t think we should take Mr. D home. “He simply won’t grow on this,” she said, referring to his intake and reflux. I asked her if she was planning on re-inserting his feeding tube. No, she was not. Then why? What could they do for him that we couldn’t do at home? “He simply won’t grow,” she insisted. We reached an agreement: if Mr. D could eat all 55mls of each of his day feedings that day, and I agreed to take him to his pediatrician in two days instead of three, I could take him home. She strongly implied that she disagreed with this, but not enough to rule it out.

Challenge accepted, I thought. For each meal, I stripped an irate baby down to just his diaper. There was no way I was letting him get warm and comfy. I did not alert the nurses to his small spit-ups during burping. I twice emptied the remaining 2-3 mls of milk into the burp cloth at the end of his 20 minutes. And he got to come home with us that evening.


Mr. A could neither suck nor swallow nor breathe at the start. He did take early breaths on his own, but with much effort. The NICU staff quickly determined that he could not maintain his breathing, and gave him surfactant and intubated him. Once extubated, no one was surprised that he could not suck. He actually had the reflex, and would happily gnaw on a Soothie if it was held in his mouth. His cleft soft palate, however, left him with the inability to form negative pressure in his mouth. As such, he could not draw liquid from a nipple, nor could he hold his own pacifier in his mouth by sucking merrily to sleep. In order to assess his ability to swallow, the neonatologists had the nurses perform what I have since learned is a very outdated “test”—they poured sterile water into his mouth. They assured me that, if inhaled, it would not cause any problems, as it was sterile and a very small amount. The first time they “tested” him, the liquid slowly dribbled out of his mouth. He could not swallow. They repeated the “test” two days later, and he “passed”—the water went down somewhere, and they assumed it went down his esophagus. He was cleared to begin oral feeds.

I was introduced to a variety of bottles and nipples, all specially designed for babies with clefts. I was a bit dismayed to realize most of the nurses had no more familiarity with these “feeding systems” than I did. Essentially, they all worked the same way: a nipple was placed into A’s mouth and he chewed on it and the nipple released milk due to compression. Some of the bottles were squeeze bottles, so that I could force extra fluid into his mouth.

It was a disaster. I was too naïve to realize how large of a disaster it truly was. Only once did Mr. A take in over 10 mls (two teaspoons). Feeding him generally went like this: hold him in a specific way (hands angling his jaw upwards, entire body elevated to at least 45 degrees, while trying to support his head and body but not of course cradled in my arms), introduce nipple, watch him struggle, watch him desaturate (often followed by heart rate decelerations), fearfully yank the nipple out of his grey-blue lips, let him recover, repeat. At the end, measure remaining milk and discover only a handful of milliliters to be missing, and then pour the remainder down his feeding tube while snuggling him to sleep.

After a few days, I told the nurses I no longer wished to feed him by mouth. I was terrified. I could feel, somehow, that his desaturation and bradycardia events were different than Mr. D’s episodes of breath-holding. I hated feeding him, he hated eating, I feared I would kill him. The nurses told me I didn’t have to do anything I wasn’t comfortable doing, meaning they would continue to do his feedings for me. That wasn’t entirely what I meant, but I was too insecure to argue. And so he struggled along for a few more days, with me or my husband holding him while the nurses fed him. I came to accept his “behavior”—after all, he was gaining weight and showed no ill signs. So I resumed the feedings.

When he was transferred to the children’s hospital, he was evaluated by their feeding and development expert. I wasn’t there (we were not forewarned of it, or I would have been!), and came to his crib an hour later to be informed by the nurse that he was no longer to eat by mouth. Ever. He would need a surgically placed tube going directly into his stomach. I was irate. He had been, I thought, showing signs of improvement. And here some lady looked at him once, did not even give him a chance to truly try, and ruled out eating for the rest of his life? I made the staff aware of my displeasure, and they promised me she would speak to me. She didn’t, not for some time.

Mr. A was eventually given a swallow study: he sat in a car-seat-like chair, being fed radioactive barium mixed with breast milk to various consistencies: pudding, nectar, thin. X-ray-like machines videotaped the entire event. And there it was in black and white: Atticus was drowning. The milk went up his cleft palate and into his nasal cavity, and from there it entered his trachea and lungs. What remained into his mouth also largely ended up in his lungs. He was unable to cough to protect himself. My baby boy had silent aspiration.

I felt awful. Guilty, guilty, guilty. If I’d held my ground at the first hospital, if I’d truly listened to my instincts, we would have stopped feeding him by mouth weeks ago. He must hate me. He must fear me. My job was to keep him safe, and here I was, endangering him every three hours on the dot. And my pride, my pride at what I thought was improvement and my wrath at the feeding therapist, who had told me what I had been unable to believe, as if my wishing could make those drops of milk enter his stomach safely. “He was took 13 ccs!!” I had argued, over and over, his record amount so strong in my memory. Almost half an ounce, I was forced to admit, almost half an ounce of my milk flooding into his lungs.

It did not occur to me until almost a year later that who I should have been mad at, instead of myself, were the doctors and nurses at his birth hospital. I was in over my head, but so ignorant I had no idea. They should have known. They should have recognized what I felt in my heart and what led me to ask to stop: this was not normal preemie behavior. None of this was typical. And they didn’t. True, the most challenging preemies are probably passed off to the children’s hospital sooner than my Mr. A was, but watching for signs of aspiration is not a difficult art, and it’s one that should be taught to and remembered by everyone working with sick babies.

Mr. A got his G-tube placed when he was negative-one-week, adjusted. His feeding plan was changed to reflect that, while he was not to eat by mouth, certain exercises could be done to help stimulate his oral-motor skills. Feeding has continued to be one of his biggest challenges, but I am happy to end this by saying that we are now very close to replacing one of his 5 daily tube-feedings with an entire meal eaten by mouth. And as for Mr. D, he is an avid eater, and above the 90th percentile in both height and weight. The suck-swallow-breathe struggles are behind us all.

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Special Needs in the NICU

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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.


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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All This and Babies, Too?: Leaving the NICU with Medical Equipment

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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.


When you are discharged from the NICU, you might be bringing home more than your baby/babies. It is not uncommon to leave with at least one piece of medical equipment. Our Mr. A, who was clearly into accessories, came home with a pulse oximeter, oxygen, suction, and a feeding tube, and shortly thereafter acquired a PICC line. All this equipment comes with extra supplies (tubing, dressing, probes, cords, chargers, pumps, etc.) It can be very overwhelming. Here is some been there/done(doing) that advice:

You will be set up with at least one “home health” company, who will own the equipment you rent (or rent-to-buy) and deliver the supplies and equipment you keep. They may also provide nurses to set things up initially, do blood draws, and, if you’re lucky/unlucky enough, perhaps even a “full-time” (8 hours a day is NOT full time!) nurse to help manage your child’s care.

Before you leave the NICU, you will be trained with the equipment. Almost all of it will vary in some ways from what you used in the hospital, so make sure to familiarize yourself with it. The home health company sends a rep to the NICU when they deliver the equipment—that is the person to drill with, as your nurse may be unfamiliar with your specific items. Ask for and keep the instruction manuals, or get them off the internet. It’s amazing how suddenly paralyzed you can become when attempting to, say, hook up the humidifier to the oxygen tank. Learn it before you need it.

equipment

Try to look on the bright side. Yes, it sucks that your baby won’t be unencumbered by tubes or wires…but hey, it’s getting you home that much earlier! All those items on the “you can go home when…” checklist can be circumnavigated. Failed the car seat challenge? Have a car bed! Can’t maintain O2 sats? No biggie! Take all meals by mouth? No thanks. No need to worry about what is growing inside the bulb syringe when you have a suction machine. No risk of dehydration with an IV! It won’t change the fact that your baby needs the equipment, and you do have the right to mope about that, but eventually either you get past it, or you send the equipment back.

Don’t send the equipment back, at least not right away. It can be so exciting when you realize your child hasn’t needed deep suctioning for a month, and so tempting to return the machines as a sign of progress. Hold onto them for as long as you can, as illness may strike. Home, like the NICU, can be one-step-forwards, two-steps-back. And insurance companies can be jerks about re-authorizing equipment.

It will be hard to get around. You’ve got a baby, infant seat, diaper bag, and all the Extras. Even if, like us, you are told to keep your baby/babies away from all germs (and therefore all people and places and things), you will still have to see your pediatrician and all specialists your child(ren) need, within days or weeks of coming home. I had to have someone come with me in order to manage everything, and so I could ride in the back with Mr. A in order to suction if needed. My mother at one point remarked that I should get a temporary handicap parking tag. I wish I had. Look into it. Depending on what your baby is attached to and how often, it may even be difficult to get around your house. Be adaptable. Set up a place for the baby to sleep in the living room. Abandon the IV pole, or at least keep it permanently in the nursery/your room/where your baby/babies sleep at night. It is very hard to navigate and takes up a lot of space. Most of the equipment comes with carrying cases—combine, discard, adapt as necessary. The goal is not to turn your home into a hospital, but to make the equipment work as best as it can for your lifestyle.

Leaving hospital with medical equipment? GREAT tips to make it work as best as it can for your lifestyle. Click To Tweet

And lastly, take everything anyone gives you. Meals from friends, an hour’s visit from a relative so you can pump breast milk or sneak in a nap. All the pink bins and every open box of gauze the hospital offers. The maximum number of tubes/probes/dots/whatever your insurance will cover that month. (If eventually you have too many supplies, cut back. But insurance doesn’t look at the long-term: if you get three a month and one month you only order two, you cannot get four the next time, even if one didn’t last as long as expected. If you truly, truly have more than you need, there are Facebook groups for exchanging or donating supplies.) All 6 nurse visits. Medicaid and SSI and WIC, if you qualify. Whatever. It can be hard to receive help, but no one gets extra points at the end for having “done it alone”, and it is easy to not notice how truly overworked and exhausted you have become until you suddenly feel you can go no further. If it takes a village to raise a child, it takes all that and then some to deal with preemies with complex medical needs.

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Special Needs: Adopting the Drug Exposed Newborn

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Categories Adoption, Parenting, Special Needs, Theme WeekTags 3 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.


Adopting from foster care means being open to the reality that the child you take into your home is likely to have been exposed to drugs in the womb. Many folks would love to adopt, but are afraid of the issues that they might face. The “scariest” reality for most is caring for a newborn who experienced drug exposure in utero. I have lived out that reality more than once, and two of those children are now my darlings for life! In fact, we are just emerging from year two of having functional multiples, who are also special needs kiddos. I’m here to tell you, it was SO worth it. It was beautiful! And, it isn’t as scary as you might think!

In the Beginning

Our journey started out with preparation. I found all the info I could get my hands on about drug exposure and its potential effects on newborns/infants/toddlers. The very best source of information that I have found is the Pediatric Interim Care Center, in Kent, Washington. They have a very helpful website, but, it is a lot of information to sift through. So, instead of just leaving you with the main link, I will include the two specific links that provided the most helpful information for our journey.

  • The first is the potential symptoms exhibited by newborns who have been exposed to drugs.
  • The second is the tips they provide on the care and handling of such a newborn. This is lifesaving information at 3am when baby is screaming, let me tell you! Absolutely essential!

I cannot say enough about this organization! They take phone calls from panicked foster parents, 24 hours a day and will walk you through what baby is exhibiting, and why, and how to address the need. Again, they’ve saved my bacon more than once!

Sensory Processing Disorder

The list of possible issues that any given child can develop as a result of drug exposure in utero is nearly endless. The many variations are just as daunting! I won’t try to cover all that info here. In my experience, the top issues that can interfere with a child’s ability to manage life well fall under the umbrella of Sensory Processing Disorder (SPD). Our two kiddos were on opposite ends of the spectrum of SPD in many ways, so I have had two of the most common kinds of extremes under one roof.

Here is my very, very, very favorite video explaining SPD and its effect on the people who have it.

That is one brilliant child! He and children like himself (and my own kiddos) have opened my eyes to a broader view on life. There is value in every day. And every child has something to give that is unique and precious!  Take it one moment at a time, mining for the gold that is in each day. But I digress!

Isaiah’s Journey

IMG_8893-1
Isaiah boy’s first bath. He looks like any other newborn and in many ways he was very much like any other newborn. Yes, he smiled like that from day one!

Isaiah was born at 37 weeks with a very “small cup” for tactile stimulation, especially oral tactile stimulation. It overwhelms and confuses him. He also had a very poor suck reflex. He was easily overwhelmed by taste, scent and sound, to the point of completely shutting down and sleeping around the clock because of an odor that had assaulted his exquisitely sharp senses. Therapists refer to his issues as sensory defensiveness. This translated into feeding difficulties.

I was horrified to realize that the nurses at the hospital are not trained specifically in how to handle newborns who are drug exposed. So, the nurse had been just holding him on his side and letting formula dribble into his mouth. She did not understand what he needed to have any hope of coordinating his movements and eating successfully! We initially fought against failure to thrive. And Isaiah was put on the same formula created for preemies. He was simply burning too many calories in his efforts to eat! Isaiah required feeding every hour to an hour and a half, around the clock, for the first several weeks of his life. And, he had trouble keeping the food in his system for any length of time. At one month of age, he had just gained back up to his birth weight.

He also exhibited signs of “dyspraxia”, a general term covering all sorts of developmental coordination issues and very low muscle tone.  At ten months old, he still could not sit up reliably on his own. His nervous system was unable to keep signals straight. It was difficult for him to translate brain signals into muscle motions. Or to coordinate movements for things like chewing, swallowing, or catching himself if he began to fall. Those things were very real challenges. But, he is living proof that early intervention is everything to the special needs child. Today his nervous system has caught up in that area to the developmental level of a child who is older than himself! He still has issues with food. But, honestly, what two-year old doesn’t? More and more, the issues I see don’t look all that different from those of other kids of the same age.

Zoe’s Journey

Zbaby-2908
Zoe girl at roughly 2 months old. Those bright eyes lit up our days!

Zoe, on the other hand has a very “large cup” for tactile stimulation (especially oral). She will put anything and everything in her mouth, even at two!  As an infant and young toddler, she would chew on everything. All infants learn by mouthing objects in their world. Zoe simply could not get enough sensory input no matter how hard she tried. People would come into our home and ask where the puppy was! To this day, she sleeps in a crib that is the very cute equivalent of a padded room: she has special safe bumpers that go around each crib slat, rather than just lining the bed. They work great and keep her from chewing on the wooden crib slats. She is what they call a “sensory seeking” child, always striving to fill her very large bucket that requires sensory input and is never full.

Always… that is, until it comes to proprioception and vestibular movement. As an infant, she would stiffen her whole body up and push you away. I had never experienced anything like it with a newborn. I often heard people comment that she was hard to hold because they were afraid that her pushing would cause them to drop her. Now we understand what she was experiencing. The therapist called it gravitational insecurity.  Zoe has a very hard time judging where her body is in relation to everything else in her world. At that time, she found certain movements dizzying and incredibly unsettling.

Today, she will enjoy a mild amount of swinging, has started climbing more, and even goes down the slide at the park! All of that is thanks to Early Intervention.

Early Intervention Programs

drugexposedThe good news is that the Early Intervention programs in most areas are able to pick up on these issues from very, very young, and work with the child to develop the skills they need. So, the thing to keep in mind is that these issues do not have to be permanent. With some help their nervous systems can mature and learn to process the information needed to navigate their world. Zoe may never be a ballerina. But, she can now run and climb and play. She is developing new skills every day!

These issues are not unique to infants who are born with drug exposure. There are many children who live with SPD and other cognitive issues who are helped everyday by these same therapies.

The chances are that many who would consider adoption through foster care programs have already been exposed to kids with these same needs. For example, that child who seems very clumsy? Trips over their own feet? Perhaps bumps into walls more than the average kid? That could very well be a child with dyspraxia. It’s really not so different. Don’t let the labels scare you. These are children! While it is challenging, caring for a newborn who has special needs is not much different from caring for any newborn. You find out what they need, how to do it, and you provide for that need.

I hope that if you sense the call to adopt on your life, this information will encourage you to do so! Do not let fear of drug exposure stop you.

Today, looking at my darlings…I really don’t see anything but typical two year olds! As our doctor recently told us, if no one had known that they were drug exposed newborns (and thus immediately placed them and their development under a microscope from day one) our doctors would be reassuring us all along that they are well within the “range of normal” and to “just give it time”.

They are so very worth our time!

Jeanene and her husband Kelly are raising a “second set” of kids together. They have six children by birth between them, ages 17 to nearly 30 (his two daughters, her four sons) and are now parenting their boy/girl “functional” twins, Isaiah and Zoe. Isaiah was 4 months old when Zoe was born. Both kids came home as newborns in 2011, and were adopted from foster care on National Adoption Day, November 17, 2012! She shares the perspective of raising multiples through adoption. She also speaks from the position of raising kids as “older parents,” something that Jeanene and her hubby have found is becoming a more and more common experience. Jeanene is a passionate landscape, wedding, and portrait photographer, but has put the business side of photography on hold to focus on the special needs of her kiddos as a SAHM. Her days are now spent in a mixture of play, occupational therapy, and everyday life with two year olds running around. Think messy! When she has time, she enjoys casual photography, hiking, fly fishing, hunting, reading, writing and working researching the best ways to meet the needs of her sensory challenged kiddos! She blogs about foster parenting, adoption, and life with two toddlers at A Miraculous Mess.

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How I Learned that My Child Had Frontonasal Dysplasia

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The first indication I had that there was a problem beyond how premature my daughters were was a delivery nurse’s comment as the obstetrician removed Baby B from my womb: “There’s something wrong with her face!” Both my girls were whisked away to the NICU, although they did unstrap one wrist to I could stroke M’s hair for an instant while I was sewn back together.

I didn’t get to see my daughters until they were 36 hours old. They were in the NICU, which I wasn’t allowed to enter, thanks to a fever. At first, I was convinced that M hadn’t made it, despite my husband’s assertions to the contrary. I could see the fear in his eyes. It wasn’t until later that the fear was as much for my mental health as for our twins’ physical health.

In those first 36 hours, I was brought conflicting news. The babies were doing fine. They would be given my colostrum as soon as I produced some. No, they’d be on high-calorie formula only. They were on feeding tubes. Only J was on a feeding tube. M was at risk of starvation because they couldn’t insert the feeding tube nasally. She wouldn’t be allowed to starve; they could insert it orally. She had no nasal passages. She might have nasal passages. Of course they’d give the babies colostrum, mixed into their formula. The best news of the day came from my friend Kaylan. As my husband tried to explain to me what had gone on with M’s nose and droned on about blockages, Kaylan cut him off. “She had a really big booger,” she said. Her feeding tube was in place now that her nose had been cleared.

Twin B in the NICU, How I Learned that My Child Had Frontonasal Dysplasia, from hdydi.com
This was how I first saw my little girl.

I didn’t really know what to expect of the NICU, and I was more struck by how tiny both my little girls were, by how many wires and tubes draped their miniscule bodies, than by the difference in shape between M’s nose and J’s or how different my identical daughters looked. The girls wiggled and squirmed much as they had in my womb, but they cried too, almost silent kittenish meows. They were alive and I could hold them. I forgot all about the delivery nurse’s comment and concerns about M’s nose and just held my babies, one at a time. They were feeder growers. There was a little boy on hospice care in the next isolette to remind me how fortunate we were to have relatively healthy children.

Closeup in the NICU, How I Learned that My Child Had Frontonasal Dysplasia, from hdydi.com

It wasn’t long, though, before M’s face was at the forefront of our medical concerns. M’s nose was asymmetrical, large out of proportion with her face, flat and dimpled. It felt more like the cartilage of my upper ear than the hard bone of my own nose. It might be a glioma, they told us, a brain tumour, around which M’s face had formed. I knew better than to rush to the word “cancer” on hearing “tumour”, but that was where my mind went. We were scheduled for an MRI. Since a newborn couldn’t be expected to be still of her own accord, she would have to be sedated. At the same time, we were scheduled for an appointment with a geneticist to talk to us about what genetic tests would show. Facial anomalies frequently accompany chromosomal abnormalities of all sorts, from the relatively common Down Syndrome to a plethora of rare conditions.

I asked whether J should also undergo genetic testing, given that she was M’s identical twin. If there was a DNA-based issue, chances were huge that J had it too. My concerns were tabled until we had a diagnosis for M.

The geneticist saw us before we even left the NICU. It was strange to attend an appointment with a doctor for a person who couldn’t be present. Our NICU was part of what was then Austin’s Children’s Hospital, and the geneticist we saw was housed in the same building, but M still couldn’t leave the NICU to attend her own appointment.

The geneticist was incredibly kind. She could see how terrified we were. She was able to give us the good news that there was nothing obviously wrong with M from a genetic perspective, but we were no nearer a diagnosis. The only thing that was still on the table was glioma. We decided early not to include my family in the conversation; I knew we needed positive energy and we weren’t going to get that from them. Even a conversation with my ever-positive mother-in-law brought me to tears, tears I had so far withheld, as she told me all she had learned about St. Jude Children’s Research Hospital and its amazing work on pediatric cancer.

We had to wait for M’s MRI to know anything more about what was going on. Her breathing seemed unaffected, her pulse-ox consistently healthy.

M and J were out of the hospital and I had returned to work before our MRI appointment day came. In fact, M had done better in the NICU than J and was released to come home at 16 days old, not bad for a 33 week preemie. J joined us less than a week later.

On the day of the MRI, we had to withhold food from M. It broke my heart to pump her meal into a bottle instead of feeding my poor hungry crying baby. She was so tiny on the hospital bed they wheeled away from us through swinging doors. The waiting was awful, but eventually a nurse came out to get us. Only one parent would be allowed in the recovery room as she awoke. My husband and I looked at each other in horror, but he made the call. “You go,” he told me, “’cause she’ll want to nurse.”

She was asleep in the enormous bed when I went to her, an IV in her hand. She wiggled a little before opening her eyes groggily. The nurse gave me permission to hold her, and she hungrily rooted for my breast before giddily guzzling her next meal.

We were told to expect answers in a couple of weeks. On day 14, I had heard nothing. On day 15, I called the craniofacial specialist who had ordered the MRI. I’d met him at M’s bedside in the NICU, but I couldn’t remember which white-coated man he was. The receptionist who answered the phone didn’t know why I hadn’t received a call. I told her that I just wanted to know whether my baby had cancer or not. It had been months since we found out there was something wrong. She heard the urgency in my voice and put me on hold, returning to tell me that it wasn’t a tumour. Why they never called me with the results, I will never know. I guess it wasn’t urgent to them because she didn’t need immediate treatment. Well, it was urgent to us.

I made an appointment to talk to the craniofacial specialist. The wait was excruciating. There was an answer out there, but we didn’t have it yet.

Frontonasal dysplasia in one identical twin, from hdydi.comFinally, our appointment came, and with it the answer. M had frontonasal dysplasia. It was a condition in its own right and not indicative of any additional problems. In short, she had a facial cleft, not unlike a cleft palate, but higher in the face. We were told that corrective surgery was an option, but that M might not need it. We should watch her activity level and let them know if she seemed short of breath, which might necessitate surgery. Around age 7, kids might begin to tease her, so we might want to consider surgery for social and confidence reasons. They showed us photos of other kids with far more advanced frontonasal dysplasia. M’s was a minor case.

We had our diagnosis by the time the girls were 5 months old. M was perfect. So was J.

M is pretty and her special nose fits her face, frontonasal dysplasia and all.
Tell me she’s anything less than gorgeous. I dare you!
Photo Credit: Lifetouch

Today, at age 7, M has come to learn that her special nose is something that some people notice. Most people just look at her and see a vibrant, energetic, smart, beautiful chatterbox. Her frontonasal dysplasia is part of her story, but not a defining part.


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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A&D’s Birth Story: 35 weeks 2 days

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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.


My pregnancy had been difficult, to say the least. From 6 weeks on, I was beset with a very severe case of “morning” sickness, known as hyperemesis gravidarum. Despite medication, I vomited multiple times every day of my pregnancy (and, in fact, for about a week afterwards). Mr. A did not have a measureable heartbeat at our 7-week ultrasound, and measured very small. He developed a nice, strong heartbeat, but continued to measure behind. When I was 21 weeks, a follow-up anatomy scan revealed a complication, not with the boys, but with me: I had cervical funneling. I was put on bed-rest.

At 23 weeks, a high-risk OB doctor informed me that our Mr. A had fallen completely off his own growth curve, and had a very dim prognosis. The doctor said it was probably a virus, infection, or placental failure. He suggested either delivering between 24 and 26 weeks, or giving up on Mr. A. The panic and helplessness I felt still clutches at my heart. I felt so incredibly torn: why should I punish Mr. D by dooming him to a very premature birth, simply because he was a twin? But how could I give up on Mr. A? Whenever people say, “I always wanted twins!” or wish twins upon someone undergoing fertility treatments, I flash back to this moment, and think no, no, you don’t want twins, please hope instead for a healthy, singleton pregnancy.

It turned out, much to my joy (with a side-dish of pure rage), that Mr. A had no virus, no infection, no failing placenta, but instead an incompetent doctor. The ultrasound machines had switched to different software or something, and hadn’t properly calculated estimated gestational age, and the doctor didn’t bother to look at raw numbers before telling me this dismal news. I had multiple follow-ups at different offices, plus a ton of blood work, and everything was fine. Mr. A was small, but doing just fine.

The weeks crept by, and I remained pregnant. I was even briefly off bed-rest, for 3-week span that included Christmas. I was, however, having very regular contractions. I had non-stress-tests twice a week, and after each one, they wanted to send me to L&D. But my funneled cervix was holding fast, so I remained on bed-rest and carried my boys all the way to my 35th week, much to the amazement of myself and my OB. I was having ultrasounds every 3 weeks to monitor Mr. A’s growth, and he was holding steady on his own curve, with Mr. D riding along at about the 50%ile.

On Tuesday, January 31st, I went in for another NST. My husband happened to have that Tuesday off, and so he came with me. My boys, especially Mr. A, gave the nurses fits at each NST, refusing to stay still for the required 20-minutes of continuous monitoring, stretching these tests into hours-long events. On this day, Mr. A was so wiggly that they decided to simply to a biophysical profile on him instead, and throw in some growth measurements for kicks.

They never got that far. The ultrasound showed Mr. A hadn’t grown in 10 days. He had, according to their measurements, actually shrunk. (I do know that babies do not grow shorter, but they can lose weight. We suspect this is what happened to Mr. A.) More alarmingly, the his umbilical cord was showing reverse blood flow. Mr. D was doing great, but my husband and I were pretty sure we knew what was coming.

But first we had to wait. The tech could not say, “These babies are coming out.” Even the high-risk OB would not say, “Today is the day.” I was sent to my regular OB’s office, where we waited. In the mean time, I called my younger sister, who is an OB in a different state, and left her a voicemail explaining what was going on. And my mother called me, and so I told her as well. About 4 hours after my NST should have been, my OB sat down with me and my husband, and said that she would schedule a c-section for 5 pm, so not to eat or drink. I had very much wanted a vaginal delivery, and she was even willing to perform a breech extraction, but with both my boys being transverse and with my lower baby being significantly smaller than my upper baby, that was off the table. I had kind of seen this coming, and really, the bottom line of my birth plan was “everyone out, alive”, so c-section it was.

The following 2.5 hours were very strange. We went home, I packed a bag and took a picture of my pregnant belly. My husband went to his office to finalize his FMLA. I watched an old episode of “The Daily Show”, thinking, “This will be the last time I sit on this couch without a baby in my house.”

I was wrong about that. While plenty of 35-weekers do indeed come home from the hospital with their moms, with little to no NICU stay, such was not to be the case for my boys. I had gotten beta-methasone shots to mature their lungs about a week prior, so I did have reason to hope. However. Mr. D had what is known as “wimpy white male syndrome”—he just did not do as well as girls or babies of other races would do. Mr. A turned out to have a very rare chromosomal abnormality, and would have needed extensive NICU time even if he had been full-term. I believe with all of my heart that the only reason Mr. A survived at all was because he was a twin. If he had been a singleton (as my current pregnancy is proving), I would not have had cervical funneling, extensive contractions, multiple ultrasounds because they simply couldn’t see Mr. D’s diaphragm or Mr. A’s kidneys due to positioning, etc. My OB-sister thinks that perhaps they would have noticed that my belly was measuring small, but frankly I am not convinced. Of course, if Mr. D had been a singleton, he would very likely have been full-term. Thus I think both my boys were in the NICU solely due to being multiples, but that Mr. A would not have made it that far if he were not.

But dreams about my future eventually gave way to reality, and we left for the hospital. My mother met us there. My husband and I had agreed that his job was to stay with the babies, and my mother felt that it was her job to stay with me.

They monitored the boys for a bit, then wheeled me into the freezing OR room. The room was teeming with people: a full NICU team for each baby, my OB and her partner, the anesthesiologist, a few nurses, and a medical student who got the fun job of holding the little tray while I vomited into it. I have always reacted poorly to medications of any sort, and the spinal and morphine and whatever else they used was no different. My husband came in, dressed to impress in sterile gear, and held my hand while they made the incision. There was a lot of tugging, which felt very odd. Mr. A was really wedged into my pelvis, and extracting him was difficult. But I heard them say, “Here he is!”

Someone—probably a NICU doctor—showed me my firstborn for less than a heartbeat. I was not allowed to snuggle him as I so longed to do, but I could clearly see why: he was a very scary shade of grey, and not crying. “He looks so blue!” I exclaimed, but no one answered. “Will he be ok?” Then I heard a weak cry, and began to sob myself. He would, he would be just fine.

And then, “5:31 pm, Baby B”…and I saw my Mr. D. They let me kiss him. I heard them call out Mr. A’s weight—3 lb 12 oz. That was 6 ounces less than the estimate, but I couldn’t dwell on that. He was 17.25 inches long. They took Mr. D and weighed and measured him: 6 lb 2 oz (exactly as estimated) and 19.5 inches. A’s APGARS were 6 and 7, D’s were 7 and 8. I think they would have let me spend more time with Mr. D, but my Mr. A needed to go to the NICU, as he was having a very hard time breathing and clearly needed surfactant and intubation (not that I could see this, as my OB was still mucking around in my uterus, extracting placentas and massaging blood out and whatever else goes on). My husband left with them, as did my heart.

I was sewn up and taken back to recovery, where things did not go well. I continued to vomit, and began shaking uncontrollably. The nurse seemed unphased, but my mother was very worried, I was I. My husband returned briefly to show me pictures of the boys, then left again. A neonatologist stopped in to give me news I couldn’t yet process: Mr. A had a cleft palate and was doing much worse than he should be. I just wanted to be with them, to see my boys, to hold them, to kiss them. I was eventually taken to a room on the floor, shaking less but still vomiting. I was told I couldn’t see them until I could walk from my bed to the wheel-chair unassisted. They would not even let me attempt this until 5 hours after their birth. When they did, I feared I wouldn’t make it. I believe I walked those 3 steps on will-power alone.

I was wheeled into the NICU, and saw my beautiful sons laying in adjacent open warmers. Mr. D had an IV in his scalp and an NG-tube down his nose, and all the monitoring devices, but no oxygen. I was allowed to hold him for a few minutes. I cried the whole time, at the love I felt for my beautiful son. Mr. A was on an oscillating ventilator, had an umbilical IV and an arterial line in his right arm, an I was not allowed to hold him until his fifth day of life. But I cried to look at him, out of love.

I did not feel a “completion”—a sense of “now I have my babies”, an ending to a birth story. I never really did. I suppose it truly ended 62 days later, when both of my sons were finally home from the NICU, and I was able to hold them both in my arms. It was a very long journey, but worth every minute.

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Twinfant Tuesday: Bathing

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D has always loved his bath. The very first time he laughed was in the bath, as I trickled water on his chest.

D, one month old
D, three weeks old

A, on the other hand, had a rough beginning. A was initially bathed in the pink hospital storage bins. He hated every minute of it, screaming from the moment he was placed on the scale (precursor to bathing in the NICU) until he was hooked back up to all his various devices, dressed, and tightly swaddled. When he had open abdominal surgery at 29 days old, plus was given his gastrostomy tube, we were told not to bathe him for 6 weeks. Thus, he only had sponge baths, which he tolerated but did not enjoy. Before the 6 weeks had elapsed, A was given a PICC line in his arm, and we were told to not bathe him until he no longer had it. (An older child or adult could, I’m sure, bathe with a central line IV, but trying to keep an entire arm out of the bath and a wet, squirmy baby in the bath, is beyond most people, myself definitely included.) Then he had another abdominal surgery which necessitated a new ostomy for his G-tube, and another 6 weeks of no baths.

And so it was that A, at 5 months old, was given his first bath in an infant tub. I happen to love (love, love, LOVE) our infant tub. We used the “Whale of a PlayTub”. It worked perfectly from negative-three weeks old (D’s discharge from NICU) until almost a year old (longer for A, who is small and has low muscle tone). I was dismayed to see that his early fear/hatred of baths was still present. I mentioned it to his PT/OT from Early Intervention, who used to work as a NICU developmental therapist and is a genius when it comes to sensory issues. She and I gave A his first “swaddle bath” right in my living room.

Giving a swaddle bath is easy. The idea behind it is to help the baby feel safe and warm. A, like many NICU babies (and probably babies, period) felt insecure in the bath and needed to learn to love it. First, fill the tub with a few inches of warm water. Make sure to have a cup or ladle near by, along with towels, soap (if you’re using it), etc. Next, tightly swaddle the naked baby in a fleece blanket. (It has to be fleece; other fabrics quickly become cold when wet.) Then place the swaddled baby in the tub. I was amazed when we reached this step, as A did not scream in the slightest. Pour water over the baby, getting the whole blanket wet. The fleece will retain the warmth.

That can be it. Or, if your baby seems ready, unswaddle one limb at a time, wash it, then re-swaddle it. Always wash the head last, as it is exposed to the air and can get cold, plus the face can be very sensitive.

A's therapist teaching me how to give him a swaddle bath
A’s therapist teaching me how to give him a swaddle bath

As time goes on, loosen the swaddle. Don’t re-swaddle the legs after washing. The idea is to gradual phase out the swaddle, depending on the baby’s needs. For A, he quickly progressed to only needing swaddling when transitioning in and out of the tub, then just in, then just loosely wrapped in a blanket which remained on the bottom of the tub after he was in, and then nothing. Now A, like D, is a water baby, loving baths, swimming, etc.

Because of my husband’s work schedule, I almost always did bath time alone during their first year. My twins couldn’t share a bath for quite some time (15 months is when we began), due to A’s difficulties with sitting upright and D’s propensity to yank on A’s G-tube. So I would put one in a bouncy seat (and later exersaucer) right outside the bathroom door, bathe the other, dress him, and then swap places. It worked very well. Bath time was one of my favorite times with the boys when they were infants, in part I think because it was largely one-on-one, and in part because they both loved their baths so much.

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When Separation Isn’t a Choice

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Categories Behavior, Classroom Placement, Development, Difference, Education, Independence, Individuality, Parenting, School, Special NeedsTags 3 Comments

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If there is one topic that comes up in twin-Mom blogs, forums and groups more than any other, it is whether to separate your twins in school. It’s a hot topic and everyone has their own best answer. There are laws on the books in many states allowing the parents to choose, but in reality it comes down to the principal and teachers’ willingness to do what is best for the kids.  Parents argue, teachers argue, each side cites studies and anecdotes. Before I was a Mom of twins, i probably wouldn’t have put much thought into it. When my boys were born it seemed so far away, and there were so many other, more pressing matters, like sleep.

Fast-forward to age 3-almost-4 and we’re on the precipice of preschool. But the decision to separate was made for me, without any real choice. Whether I could or would choose to put my boys in separate classes in kindergarten and beyond, I know for certain I would not have chosen to separate them at age three. Starting next month my little boys, my babies, will be starting preschool in two different classes, in two different schools in two different parts of town.

We’ve gone back and forth over the past three years whether to even put them into preschool. Long ago, before their second birthday, I quit my job to stay home full time, and had a pretty decent home preschool thing going on with them. We did fun things, they learned a ton. But by their third birthday, one seemed to be really “getting it” with complex language, learning letters and numbers, explaining complicated concepts. The other deferred to his brother for the answers. We started to see problems with behavior, outbursts that were beyond 3-year-old tantrums. He would be agitated, impatient and inflexible.  Early Intervention is available to kids under 3 who show signs of developmental delays, but he and been on track up until his 3rd birthday, so we never had any reason to call. After age 3, those services are provided through the local school district. Between January and May of this year, he went through several screenings at the school district’s preschool program, and they determined his delays sufficient enough to warrant services through the school district. He does not have a diagnosis other than “developmental delay” in the district’s qualifications. He will be starting there four days a week in September (meanwhile we are waiting for an appointment with a developmental specialist as well.)

My other son will be attending a local private preschool, the one we intended for them both to start this year. As luck would have it, some of our closest twin playmates will also be in that class. He will be going only two days a week, one of which overlaps with his brother’s school days. We have been trying to build it up all summer as a great chance to do fun things at school and how amazing it will be to run home and tell your brother. But truly, it kills me to separate them. I know they are very attached to each other. The few times we have split them up to run errands or take them to an appointment, they only worry about the other. One will tell perfect strangers in a store about where his brother is and what he is doing at the time. They speak in plurals “we would like a snack.” and do everything with the other in mind (like swipe two yogurts from the fridge, one for each!) We had a brief separation in swim lessons when one kid moved up to the next level and the other wasn’t quite there. The instructor asked if we preferred to hold the one back until they were both ready, but that didn’t seem fair. The first class they were apart the one who wasn’t quite ready refused to go in the water and cried the entire 30 minutes. He also refused to do the lesson the next three weeks.

So in a few weeks, I am going to load up my 3-year-old with a backpack full of school supplies (My Baby! School Supplies?!?!) and put him on a school bus (which I am told is outfitted with car seats for little guys.) while his brother and I wave from the lawn. On alternate days I will wait for the bus and then take the other kid to school in our not-a-school-bus Minivan. (and if you don’t think that is a Big Thing then you don’t know 3-year-old boys.) They will spend 15 hours a week apart. Neither will have his brother there when the class celebrates their birthday. My heart breaks for them. When we talk about school starting, one will invariably say, “But I will miss my brother!” while I fight back tears. It will be great to finally have one-on-one time with each, but I can’t help but feel the other will be missing out. Or maybe we will be missing out while he is having a blast at school. One of the arguments I have read so often about separate classes for twins is that they are different people and need different experiences, but can find each other at recess or lunch and still maintain their bond. I love how close my boys are to each other. I want them to excel and I want what is best, but I also want them to have each other and not feel like we are taking one away from the other.

Will this be great for both of them? Absolutely. Is it going to be the toughest adjustment we’ve faced so far? Undoubtedly. But I hope we can get each the level of help he needs to excel in school, and we will all work together so that maybe, just maybe, I can exercise my right as a parent to chose whether or not they will be together in Kindergarten after all.

Jen is a stay-at-home Mom of 3-year-old twin boys who have already packed their backpacks several times with favorite toys and random treasures, ready to start preschool next week. Their adventures are (intermittently and mostly in photos) blogged at goteamwood.com.

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Twinfant Tuesday: Why Not? (And Earplugs)

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Categories Adoption, Balance, Emotion, Feeling Overwhelmed, Frustration, Guilt, Infants, SAHM, Special Needs, Toddlers, Twinfant TuesdayTags , 8 Comments
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Yeah, that look on Isaiah’s face? We all had that look in that first year after she came home..often!LOL!

Famous last words! “Why not?” Those were the words that kicked off my first year as a mom of functional multiples!

It was two pm on Friday, November 18, 2011. I was standing in my living-room-turned-nursery, bouncing my four-month old (then) foster son when the phone rang. They had a little bitty girl, a little bitty girl they had thought about calling us for placement ten days earlier when she was first born, but there was a family who “had waited longer for placement of a little girl.” So, they tried placement there first.Thing is, it didn’t work out for that family. I laugh looking back at it now; I didn’t even ask why! I just said “Sure, why not?”

After all, all of our paperwork as foster to adopt parents said “female 0-2 years of age”. Everything. This was the moment we had waited for and dreaming about for years! I had suffered a pregnancy loss of a daughter midterm over 17 years ago. The desire for a little girl of my own never went away.

Of course, we hadn’t planned on two babies. There was nothing in our paperwork that said “boy”. I have four boys by birth! But when they called us for him four months earlier, we just knew that this was our boy. So, there I stood. Nodding, twinkling, smiling at my husband who was shaking his head in wonder, and boom! It began. Our first year of life with two teeny little people!

First quarter. Year one.

Zoe was a screamer. Yes, really. She was sweet. She was beautiful. AND she was a screamer! I already had some experience with having two. We had another little girl for a month, off and on, as a respite baby. Seriously, I thought we had experience! So, yeah–small detail–that other little girl was not a screamer.

We didn’t even make it back home before we knew why it “just wasn’t working out” for the other family. That foster mom was a single mother and had to work full-time. Dealing with that shriek all night every night was just not in the realm of possibility for her. Heck, it pushed the limits for me!

Yes, really! This is survival man!

So, while the other MoMs here have touched on organization, asking for help, and keeping a positive perspective, (all absolutely critical to surviving the first year. I guess that last one could be a part of my strategy as well.) I, on the other hand, will address ear plugs. That’s right. You heard me. Don’t have any, do ya? Ear plugs!

I don’t know about you, but crying babies have always created a great sense of alarm in me. I am really sensitive to sound anyway. On the flip side of this issue, I am very musical. I can get lost in a melody for hours. I can hear a song one time and sing it back to you note for note, verbatim. It’s of like a photographic memory, but in my case audiological memory, for lack of a better word. Unfortunately, this was no melody!

The incredible urgency to fix.it.right.now.whatever.it.takes has always been an issue for me. And that was before I heard Zoe cry. Zoe’s cry could make the hair stand up on the neck of any parent. We finally dubbed her “Sonic” because we were pretty sure that even after she stopped shrieking 24/7, some of the sounds she emitted were dolphin-speak and could only be heard on dry land by canines! Really.

Once in a phone conversation my sister asked me, “Is that a car alarm?” My reply? “Um, no. That is my daughter.” It made me want to pull my hair out. Honey cried all of the time. The first three months were just torture for all of us. There were moments when I had to just go lay her down in her crib, walk away, and cry myself for a few minutes before trying again.

Epiphany

The earplugs entered the game the first time I was alone on a road trip with both babies. I was delivering one of my older boys to college. Holy-Screaming-Banshees-Batman. They both started in. It was dark. Exhaustion loomed. I had already been crying. Dealing with empty nest feelings while raising two toddlers is an interesting experience, but I digress. As the decibel level began to climb, I simply could not imagine enduring the remaining two hours ahead of me!

It was then that I remembered that I had read about a mom of twins who used ear plugs in the car, among other places. I laughed when I first read her story, but suddenly it made sense! And in my fervor for better preparation, I actually had some in my bag.

At first, I felt foolish pulling off the freeway to dig for earplugs. Then I felt guilty.

After a few miles of relief from the most intense of my physical responses to their crying, I was able to think clearly. I realized that there really was nothing more I could do. I had already stopped and fed everyone; Zoe had cried through most of the meal anyway. They had clean diapers. What they needed now was sleep, and to get home. There were over two hours of road between us and home.

The earplugs remained in use. After a few miles of my being calmer and not fussing about them fussing, there was silence. I have never been a CIO mom. I just can’t do it. I wear my babies. But, I had to learn to separate myself a bit from the crying when there was nothing more I could do to help them. And drive. That was a big epiphany for me.

Today

Earplugs are now a very important part of my life in parenting multiples. I have two-year olds, and Sonic Girl is alive and well! Add to that the fact that there are mornings when my son is obviously going to have more sensory issues than on the typical day–or maybe I am just not really awake yet–and you can see where these could come in handy!

They allow me to ignore two-year old tantrums. They enable me to stay calm when caring for a child who has suddenly gone all “exorcist” on me. Have you ever dealt with a tantrum from a child with seriously high muscle tone? They sort of levitate! And it is usually during a diaper change. Earplugs allow me to step back, think calmly, and make good decisions. And they keep me from adding to the stress/tension/chaos.

Please note, the earplugs do *not* make it so I cannot hear them at all. They just take the painful edge off of the screaming/crying/hysteria.

Of course…it didn’t hurt that they were so darn cute!

So, there ya go. My big tip from the first , and now second, year of life with two little screaming babies: earplugs and deep breathing. It saved my sanity more than once! Try it. It just might save yours!

 

Do you have any unorthodox approaches to handling tantrums? How do you stay calm and ignore two-year old behavior?

 

Jeanene

Jeanene (and her husband Kelly) are raising a “second set” of kids together. They have six children by birth between them, ages 17 to nearly 30 (his two daughters, her four sons) and are now parenting boy/girl “functional” twins, Isaiah and Zoe. Isaiah was 4 months old when Zoe was born. She blogs about foster parenting, adoption, and life with two toddlers at www.amiraculousmess.com.

 

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