The life and times of Momma Jumbo

Victor loves to give nicknames, and they usually stick. He is “Bear,” his twin brother Oliver is “O-leach” or “The Bug,” my husband is “Lollipop,” and I (sadly enough) am “Momma Jumbo.”

I know. It’s a tough moniker to swallow. When he first heard it, my husband smartly stifled his laughter. “Shut up,” I snarled, “You’re ‘Lollipop.’”

After a few days of him yelling, “Momma Jumbo!” in the supermarket aisles and at the playground, I had to intervene.

I do not fit the traditional princess mold in appearance or attitude, so I understand why I didn’t get “Cinderella” or “Snow White” (even though I do have dark hair!). If he was stuck on a cartoon character, there was Jessie from Toy Story 2, or, heck, I’d even take Dory. My son just shook his head. “No,” he said, they were not right.

Fortunately my son does not know about my lifelong preoccupation with my weight and my crazy body image issues. He does not see the look on my face when I step on the scale or when I try on a pair of pants, desperately hoping that a size twelve will fit nor does he see the my look of utter devastation when I realize I will need a size fourteen.

He doesn’t know that even when I am at my thinnest, because I am so tall that I still feel large. He doesn’t know that I secretly long to be petite (like a Disney Princess), to be the type of woman who is easily swept up into the arms of a Prince Charming. I admit I have picked up a romance novel or two, wistfully gazing at the cover. When I semi-jokingly ask my husband to pick me up, I see the momentary look of panic on his face.

For all these reasons, unknown to my little boy, his nickname for me hits just a bit too close to home – not that I can think of any woman, regardless of her size, who really wants to be compared to an elephant, especially one called “Jumbo,” even if she is Dumbo’s mom.

I sigh and ask him again, “Why Momma Jumbo?”

He looks me straight in the eye and simply says, “Because Momma Jumbo loves her baby more than anything in the world, and that’s how you love me.”

I am speechless. Momma Jumbo it is.

My take on the Today Show interview with the Duggars

I used to think Meredith Vieira was a journalist, but the only explanation for her fawning over the Duggar clan on Tuesday morning’s Today Show interview must be that she is a hired gun from Team Duggar or that she in interviewing for Entertainment Tonight. Or both.

Meredith started the interview by introducing the Duggars as “America’s favorite family.” I do not think that is an accurate statement. It would be fair to say “One of America’s most polarizing families,” but not favorite. There are many people who feel that a carbon foot print as big as theirs is not responsible. There are also many people who feel that children shouldn’t be asked to co-parent.

Meredith threw soft ball after soft ball. We learned that Josie, like most 25 weekers, had a very rocky start. It’s a miracle was mentioned many, many times. We learned about her lactose intolerance and how she still needs oxygen at night, but most of the questions were benign. I was literally on pins and needles waiting to hear about the color of her layette.

And then at the end, Merideth asked the question. Will they have more kids? Apparently Michele and Jim Bob are open to the idea.

Lots of smiles all around and then…commercial. Next segment.

A good journalist would have asked that question first and skipped asking the kids, “What’s it like to have your sister home?”

I wonder if Meredith felt she was limited because of the kids?  I am reminded of the drug seeking patients who bring their young children to their doctor’s appointment, thinking the doctor will be too uncomfortable to discuss drug abuse and just provide a prescription for Vicodin, Norco, or whatever.

That tactic does not work on me. I don’t pull any punches, because patients come to me for good medical care and likewise, I watch the news for journalism. I get that having their 18 or 19 kids (or however many were actually present, because between you and me, I didn’t count) is good for their brand, but as a consumer of news I am not interested in the Duggar brand, I am interested in the news brand. Meaning, are you going to ask the questions that need to be asked or are you just a moving picture version of People Magazine?

If Matt Lauer can go mano a mano with Tom Cruise about his comments on post-partum depression, surely Meredith can ask a couple in Arkansas some real questions? Questions that everyone around the country is wondering and questions that every parent of a preemie is asking.

Questions like:

1) Michelle, you just said that you are open to more children. Do you mean another pregnancy or adoption? If you mean another pregnancy, you have a more than 60% chance of developing severe preeclampisa before 28 weeks. Meaning, in all reality, there is a 60% chance that you will have another extremely premature baby. Do you think it is ethical to have expose a baby to these risks, knowing more than 30% of babies born this early with have a moderate or severe disability?

2) You mentioned many times that God had a role in Josie’s survival. What do you mean by that? Do you think God picks who lives and who dies? Premature babies born in 3rd world countries are more likely to die, so is that part of God’s plan or do you think access to good medical care has any role? You also mentioned it is a miracle. A miracle that you had great health care and health insurance, or simply a miracle?

3) You have stated many times that you do not take government assistance and that you are proud of being financially responsible for your children. But babies who weigh less than 1,200 grams at birth are immediately Medicaid eligible. It is a Federal Law. Your NICU will have billed Medicaid for anything your insurance did not cover, which in most cases is a lot of money. A typical bill for a 25 week baby in the NICU is over $500,000. There is also a lot of essential follow-up medical care not covered by the majority of health insurances, so will you use Josie’s Medicaid to access those services?

4) Most babies born at 25 weeks require extensive physical therapy and occupational therapy as well as countless visits with doctors. How will you find time to do that if you are also home schooling your children? As your older children co-parent, if you get pregnant again do you think a 15 or 16 year old can be trusted to provide the complex needs of a former 25 week baby?

5) If you get pregnant again, the risks to your health are great considering you have a 60% risk of developing severe preeclampsia. This is not a benign disease – preeclampsia is the third most common cause of maternal death in this country. That means 790 women die from preeclampsia for for every 100,000 babies born alive in the United States. Do you think it is ethical to put yourself in this kind of potential harm knowing that the best thing for a child is a healthy mom?

Many moms, myself included, who have an extremely premature baby wrestle daily with the idea of having another child. Could I take another 5 or 6 or 7 months or longer in the NICU? How will I give my older child the intensive attention they need with another baby? What if I am hospitalized on bed rest or have another preemie – who will do the  PT, the OT, change the oxygen tanks, and remember the medications for my child at home? What if I have another preemie and she is severely disabled?

The news story for me was the answers to the hard questions, because I want to know if they are simply promoting their brand (because saying they are open to more kids sure got tons of repeat airtime and set many blogs a blaze) or are they really that blind to the risks? I am not saying that having another baby is right or wrong, but you cannot deny that it may have serious consequences.

For the record, I would field those questions myself any day.

1) I won’t get pregnant again, I don’t feel I can trust my body. I am totally open to adopting a preemie, because our family was meant to be three.

2) I don’t think God had anything to do with my two of my kids surviving and one dying. What kind of god allows a newborn to die in his mother’s arms? I think that state of the art medical care provided by the amazing doctors and nurses at University Hospital is responsible for saving my boys. I think hard work at home helped them to thrive. I think that many babies, despite excellent care, are not as fortunate as my boys, because many other factors, such as birth weight and infection, also affect outcome.

3) My two boys had Medicaid for a year. It would have been impossible for us to pay for all their needs without it. No parent can.

4) Because our boys required so much PT, OT and other services the thought of having another baby did not cross our mind. All we could think about was helping our two boys live their best life. Now that my boys are seven the idea of a third has moved into my conscious mind.

5) As an OB/GYN I have seen women die from preeclampsia. I will never forget a patient whose brain swelling was so severe that a neurosurgeon drilled holes into her skull to try and relieve the pressure. It did not work. The pressure in her head created by the swelling pushed her brain downwards into her spinal cord and she died. I still remember her face.

Of course, if the Duggar’s don’t want to face the hard questions, they certainly don’t have to appear on national television. Then again, a new season on their show was returning that night on TLC.

Ultimately, my issue is with NBC, because everyone tries to get on to the morning shows to promote their brand. It is the job of a television crew to make that into news, not an infomercial. Making the segment a piece of fluff makes prematurity look like “golly gee, it was sure a scary ride, but everything is just fine now.” That is not the reality of an extremely premature baby, and it cheapens prematurity for those of us who have wrestled with these very difficult questions on many a night until the wee hours of the morning.

Leaving the hospital without your baby

Before things went wrong I had mapped out a scene from our future.  I think every parent does. Whether it is your baby’s first smile, how you will look pushing your baby in a stroller, or taking your child to their first day of school.  I suspect the image is different for everyone. For me, it was a picture of being wheeled by my beaming husband to the front doors of the hospital clutching three baby boys. Heads would turn and everyone would say, “Triplets!”

As an OB/GYN I have seen it a lot. The father or partner nervously sprints to the car and as the mother passes by cradling her precious bundle, almost everyone smiles and remarks on the baby. It is hard not to get caught up in the excitement of a newborn. The mothers are like beauty pageant winners, clutching a baby instead of roses, their faces beaming with excitement as they glide through the hallways as if they were taking their first turn on the stage before an adoring crowd. I really wanted that wheelchair ride. But no one looks at the mother without a baby. We are the invisible.

I still come and go from a hospital every day, just as I done for more than 20 years.  To this day I have to turn away when I see those smiling mothers as they glide towards the hospital doors as it reminds me of how I felt getting into our car so many years before. I can never escape it.  It is a visceral reminder of all that was lost. There are some wounds that never heal.  I know it is not their fault that my pregnancy did not go as planned, that after months of intensive care I left the hospital with two critically ill boys instead of three healthy ones, but I cannot help it.  It is a reminder of all those original dreams long discarded but not forgotten.

A mother should never have to leave the hospital without her baby.

Important car seat info for preemies

To leave the NICU you need a car seat, specifically a car seat that will not affect your baby’s oxygen level while keeping them safe from injury. The problem is car seats, like just about everything else, are designed for term babies, most of whom weight 6 1/2 lbs or more at birth.

Many preemies weigh less than 5 lbs when they are ready to go home, so you need to look at the car seat specifications. I know it is easy to get caught like a deer in the headlights with the accessories, colors, etc. etc. I was so excited to be buying a “real” baby product for my boys that only the “finest Italian” brand would do. Turns out, I bought the wrong car seats. My boys didn’t hit 5 lbs for almost a month after discharge and the car seat I picked was only rated down to 5 lbs. In addition to being a safety concern, too large a car seat is an airway hazard. When a baby does not fit well in her car seat, she can slump over, kinking off her airway. Preemie airways are weaker and in addition, many premature babies have weaker muscles, so they are more likely to slump and kink their airway, dropping their oxygen levels. That is the whole reason for the car seat test!

So the 2 key specifications you need to consider for a preemie are the lower weight limit and lowest harness height. The weight is self explanatory, but the harness needs to be at armpit level; for most preemies that means less than 8 inches from the seat. Even with the smallest settings, some babies will still slump over so I have included a nice diagram in my book that shows you how to use receiving blankets to pad your baby so her neck stays straight and she remains centered in the seat.

Another car seat tip is to never use unapproved inserts (i.e. not made by that manufacturer for that specific model)- these can dislodge and cause problems with the airway or even become a projectile if they become loose during an accident.

Car seats also have an upper weight specification; however, for many preemies this will not be an issue for a very long time. Many car seats are only rated to 20 lbs, but some are rated higher (like the Chico KeyFit 30, up to 30 lbs, and the Combi Shuttle 33, up to 33 lbs). But let’s put than in perspective. Depending on your baby’s birth weight, those numbers may be so far away that they are not worth thinking about right now. For example, Oliver, birth weight 1 lb 11 oz, didn’t hit 20 lbs until he was 2 years old and didn’t get to 33 lbs until he was five years old!

I also recommend looking at Consumer Reports for safety. If you don’t want to buy access on-line, go to your local library. That’s what we did! It actually made a nice little field trip from the NICU.

The table below is adapted from the American Academy of Pediatrics 2010 car seat data.  I have deleted the upper weights, less of a concern for preemie parents, and included lower weights as well as tracked down the lowest harness height. Some manufacturers give a minimum child height instead, so when applicable, that is listed too. For a couple of car seats I could not find the lowest harness height, so those spaces are left blank

The Chicco KeyFit had a good recommendation from Consumer Reports and has a minimum weight of 4 lbs as well a lowest harness height of 6.5 inches. Not an endorsement, just the facts. What is most important is that your baby fits in her car seat. Many babies fail their car seat challenge test based on fit, and sometimes you will need to return your seat and pick a different model, so what ever you do get one that you can return if need be.

Table 1: Car Seats by Harness Height and Minimum Infant Weight as of July 2010

Eating right is vital for parents of preemies

When your baby is in the NICU, the last thing you think about is yourself. In fact, that’s how is is for a long time. When your baby is sick, you grab a bite here or there, or maybe you don’t eat at all. If you are a stress eater, like me, you eat everything and anything. When you get your baby home, things like grocery shopping and self-care go out the window when you are worried about ordering oxygen tanks and scheduling the 33rd doctor appointment for this year and it is only July (sigh).

The problem? Not taking care of ourselves is detrimental to our babies and children. When we are hungry we are stressed and perform poorly. When we eat junk, we do not function as well. One of my favorite sayings is “everything we do to ourselves, we do to our kids.” Our kids are sponges, even in the NICU. They are hardwired to pick up on our emotions and moods and quickly learn to model that behavior.

When you are hungry you will be tired and you won’t process information as well. If you were on an airplane, would you want your pilot to be starving?

Here’s another thing. Babies need to model their eating after someone. As our preemies grow up, they are at high risk for eating disorders, due to sensory issues, physical weakness, medications that affect alertness and appetite, and a whole bunch of other reasons that are totally unfair. How can you expect your baby with a sensory integration disorder NOT to stuff food in their mouth if you are stuffing your own mouth. How can you expect them to assign importance to eating if you don’t? Yes, there are a billion things to do, but take it from me, you won’t get any more of them done eating nasty left over mac and cheese running around the kitchen (it does, however, get you a nice muffin top). Your baby needs to see you sitting down for dinner and taking small bites, enjoying your food. They need to see the social aspect of food and the mechanical aspect of eating.

So how do you accomplish that?

Two words: crock pot.

I never used a crock pot until the boys were in the NICU. After a few weeks of eating crap, which only made me feel crappier, I decided we needed do something. Problem? Too tired, mentally and physically, at the end of the day to make something. All my recipes are throw and go (I am sorry, browning the meat beforehand, no matter how much nicer it looks, totally defeats the purpose of a crock pot). My recipes are also healthy and the other crock pot bonus – cheap.

We do crock pot Monday. That way, my first day back at work after the weekend I come home to dinner already made. Today’s recipe was chicken and beans, TexMex style. It took me 5 minutes to prep this morning, and that includes removing the skin from the chicken thighs!

Ingredients (serves 4):

1 cup pinto beans, washed.

1 cup water

1 small (16 ounce) jar Pace picante mild salsa (you can do medium if you like it muy caliente).

2 tbsp. flour

8 skinless chicken thighs, bone in.

1/2 red onion, diced.

What you do:

Put beans, water, and salsa in crock pot. Add the flour and stir until major lumps are gone. Add chicken thighs and some salt and pepper. Sprinkle with red onion. Cook on low for 8 hours. I let it go for 10 hours, because I start it before I go to work. Any more than 10 hours and the chicken over cooks.

Calories (because I care about that stuff): 450

If you serve it with some sour cream and cilantro it looks fancy.

If you friends ask what they can get you, tell them a crock pot!

Remember, taking care of yourself IS taking care of your baby.

Predicting outcomes for extremely premature babies

Remember, this information is not direct medical advice.

When you are at risk for delivering prematurely between 22 and 25 weeks it is very hard for doctors to predict outcomes. It is actually difficult to make predictions for preemies in general, but is even harder before 26 weeks. At 26 weeks 85% of babies survive, it is 90% at 27 weeks, and it the odds just continue to improve from there. Although it is not possible to predict which baby will be in the 85% or 90%.

Before 26 weeks there is a wide variability in outcome, with some babies doing very well and others facing immense challenges that lead to profound disability. At this extreme of prematurity it is important for parents and doctors to look at factors beyond gestational age. In addition to how many weeks you are (gestational age) that birth weight, sex of the baby, whether the pregnancy is multiples (twins, triplets etc), and whether the mother received steroids all play a role.

The National Institutes of Health has developed a gestational age calculator, a tool to help identify the chance of surviving and the chance of surviving without a moderate or sever disability. Being at the worst end of the statistics and seeing your baby’s chances distilled to a percentage is one of the worst things in the world. I know. I ruptured my membranes at 22 1/2 weeks. At my sons’ estimated birth weight his chance of survival without severe impairment was in the 1% range, so we elected to only provide him with comfort measures.

The calculator is not a crystal ball, it will not tell you what will definitely happen to your baby, just the odds of survival and of survival without moderate or severe disability.

The numbers may mean different things to different parents depending on life experience, religion, family beliefs, finances, previous premature deliveries, and even the number of children at home. It is not wrong to consider all these options. Raising a child with a profound disability is an incredible life-long challenge and letting your baby go is heart breaking. It is the ultimate Scylla and Charybdis.

If you are between 22 and 25 weeks and want to/need to look up the statistics on outcomes you can use the calculator tool provided by the National Institutes of Health.

Remember, there are no rights and wrongs. We are all writing our own stories. All you can do is gather the information, apply your values, and try and make the best decision for your family. For each one of us that will mean something different, and that’s OK.

The heaviness of July, the breath of Hades

July 4th is always hard for me. It was the last day of normal, the before time. I was still pregnant with triplets planning a life with three boys, expecting a c-section at 35 weeks or so. All neat and tidy.

We had some friends over. Two couples each with one small child. My husband grilled and I made a couple of things but took it easy most of all. I had been off work for about 2 weeks. Deep down I didn’t feel right. I had been feeling some kind of unrest deep inside me for a few days, but could not put my finger on it.

The next day, July 5th, I ruptured my membranes. That’s 7 years ago today. I was dreaming that I was swimming and when I woke I was soaking wet. It was as if I had been stabbed, because as an OB/GYN I knew that the prognosis was dismal. That I would probably lose all 3 of my sons. It was a miracle that only one died – my son Aidan.

July 4th was the precipice and July 5th started what I can only call the journey of Narcissus. I feel as if I walked to the mouth of hell and climbed out with two of my sons. Now, the heat and heaviness of July is the breath of Hades on my neck. I am not afraid of it, but it still stirs a sadness so profound that my bones ache. And like Narcissus I feel the creep of self doubt and hear whispered questions, wondering if I really did everything that I could.

What to tell your friends and family when your baby is in the NICU

I was lucky enough to speak at a discussion series for Hand to Hold, a support and mentoring program for parents of premature babies. This was my very first book signing, so I was very anxious to help the moms and dads in attendance and also get feedback, because I think I am spreading the right message, but a lot of my conversations happen in my head, so you just never know.

The topic I selected was the mind-body connection. I spoke about post-traumatic stress disorder, depression, stress, and anxiety – the 4 horsemen of prematurity. Knowing the statistics, it did not surprise me the number of heads that were nodding or the tears sliding down cheeks that were by now so used to the steady flow that there was no thought to brushing them away.

I was most touched by the questions at the end. The stories, all different but also the same. A grandmother was there for her daughter. Her grand baby in the NICU now 6 months and still on a ventilator. Her daughter was having difficulty coping with the constant requests for updates.When would he get off the ventilator? When was he coming home? A barrage of  questions that she didn’t even dare to whisper to herself. And with each well intentioned request, the wound deepened. Did I have some advice for her daughter?

You bet I did – tell them to stop asking questions. Yes, people want to know, but they also need to know that each time they ask, each time they force you to consider the unthinkable, it only makes things worse. If there was good news they would already know, because it would be sung from the highest mountain top and Facebook and Twitter streams with would be twinkling like Christmas lights. Asking how and when and why is not helpful. It forces parents with premature babies to carry an ever heavier load when we are barely treading water as it is.

People who are not intimately aware of the prematurity have no idea what to say. They don’t know that our days and nights in the NICU, and often for many years afterwards, are filled with unthinkable thoughts. So be blunt. Tell your friends that the only questions to ask are How can I help? and What can I do? It’s not being rude, it’s being honest. Take it from me, it will ease your load just a little bit.

Cool crayons provide help for weak hands

Oliver has very weak muscles – hypotonia is an unwelcome legacy of both congenital cardiac disease and prematurity. He also has very lax joints. When Oliver tries to use a pencil or pen, his hand basically collapses and the only way he can hold it is to use his hold fist, in an bizarre claw-like grasp. After 18 months of kindergarten, despite multiple writing implements and many adaptive devices there has been no progress. The tripod grip that we all take for granted seemed to be as elusive now as it was when he first started kindergarten in 2008. We had hoped with age his muscles would gain strength, and some have, but not his hands. And so, he avoids drawing and writing, because to try and try and still not succeed is just too much for a 6 year old to bear (sadly, he can’t always see that his trying is such a huge success in itself).

We decided to get an occupational therapist to work specifically on his hands. Oliver’s other muscles seem to be getting just a little bit stronger (he can finally jump with 2 feet off the ground, a feat worthy of a month of blogs!), but his hands still collapsed  immediately on any writing implement. After several different tools she settled on Crayon Rocks – yes, crayons shaped like little rocks.

There is only enough room for a tiny thumb and 2 fingers, it is not possible to write and grasp them like a claw. And they are cool – multicolored and unlike anything we had used before. They are more like a toy than an adaptive device. They are also made of soy, so completely non toxic and all natural.

CRAYON ROCKS ARE A MIRACLE!!!!! There Oliver is, using a correct writing posture, drawing with rainbows and suns flowing out of his little hands. And each time he hold his hands correctly, he is strengthening his muscles and developing important muscle memory. It is amazing how success breeds success.

And this week, when I volunteered in his class, I saw him grasp his pencil and start to write with his old claw-like grip, so I leaned over and whispered, “Just like the rocks, baby.” He didn’t look up, but I saw the creep of a small smile in his lips and a flash of confidence in his eyes as he corrected himself and finished the task holding his pencil in a triumphant tripod grip. I looked away, because clearly I had something in my eye.

(Check out the Preemie Products page for a link to the Amazon site for Crayon Rocks).

The tooth of the matter

My boys are losing baby teeth (or milk teeth as the dentist calls them, because they are the color of milk, who knew?). Oliver’s dental dance is following the right sequence of steps, but Victor, well, one of his baby teeth at the bottom just hasn’t fallen out. I was expecting a big boy tooth to erupt behind, like a shark’s tooth, and push out the hanger-on, but instead, the next adult tooth popped up to the side. Hmmm, curious, but I just figured the tenacious baby tooth would eventually get wiggly and give up. But no. However, after weeks and weeks of wiggling, it was clear that damn tooth wasn’t going anywhere. Off to the dentist we went.

Less than 5 seconds into the visit the proclamation was handed down – Victor only has 3 adult front teeth on the bottom, not the not the required 4. I started on horror at the x-ray. The dentist intimated that surely I had already been told and therefore must have known, but I just shook my head and bit my tongue because inside I was screaming, “If I had known, I wouldn’t have taken off work early and lugged my tribe into your office.”

My first question was if this missing tooth was related to his prematurity. The dentist said no, “It just happens.” Apparently, lots of stuff just happens to us.

According to the dentist being short a tooth isn’t a big deal, because when you smile only your top teeth show (unless you have one of those creepy television evangelical minister smiles like Ted Haggard). “In fact,” she added,  and she was so cheery about this, his mouth is small, so this might save him from needing to have a tooth pulled later on.

So, the dentist was okay with it, but Tony and I were not. All day, we muttered about the missing tooth. “I can’t believe it,” and “I’ve never heard of that before,” and “His smile will be weird!” Fortunately, Victor just ignored us.

Over dinner, when Tony and I were still beating it to death, Oliver piped up. “Mom, you just need to get over it. It’s only a tooth.”

Such insight from the mouth of babes.

And so we did. We’ve gotta practice what we preach, because obsessing over something that simply cannot be fixed gets you no where.