Reflux in Preemies

I’ve been communicating with a mom who had a 30-weeker two months ago. I met her through a Facebook page devoted to the local donation of breast milk. She contacted me to see if I could donate to her baby, but I’d already committed to giving 1,500 ounces away and was having to turn moms down. I had to tell her no, but I offered to answer any questions she might have as she journeys through Preemie Land. It has been a joy to help her, and it has made me want to do more.

Her question yesterday was about reflux, and I answered with a solid YES! Yes, both of my babies have had problems with reflux. In fact, I think most preemies suffer from it to some degree because they’re eating way before they’re designed to be eating (because they’re out of the womb weeks and months too early). I believe many babies have mild reflux issues as their bodies get used to swallowing, holding food down, and digesting that food. But, preemies have even more immature systems, not to mention stronger gag reflexes from having tubes down their throats and possible side effects from the supplements and medications they have to take while other babies were peacefully kicking around in their mothers’ wombs. Sure, you can hold your baby upright for 30 minutes after feeding, you can burp frequently during feedings, you can change the diets of breastfeeding mothers and switch formulas for formula-fed babies, and you can slightly and carefully prop up the mattresses of bassinettes and cribs (boy, that will sure start a debate among NICU nurses and doctors), but sometimes all of that isn’t enough. Both of my babies needed acid reflux medicine. Most of them have few side effects, and I swear I could tell a difference within a few days with my son and immediately with my daughter. I think if your baby is screaming uncontrollably around feeding times, is vomiting up much of their food, or is coughing down stomach acid, a little medicine twice a day is a lifesaver! I personally believe reflux has been under diagnosed in term babies in the past, and some old school doctors still tell parents to suffer through the phase until the baby is developed enough for the flap at the top of the stomach to do a better job of keeping acid out of the esophagus. But, preemies tend to have an additional problem. Their immature systems freak out and they tend to have a stronger reaction to esophageal pain–they just projectile vomit entire meals right back up, which is just awesome when you’re already stressing over every ounce your little baby needs to gain.

At this very moment, I am still completely confused as to why the doctors in the NICU, whom I very much respect, dismiss reflux in preemies. Most NICU nurses completely believe it is a problem (because they spend their days caring for babies with it), and many of them advise you to bring the issue up with your pediatrician as soon as you leave the NICU. Some pediatricians are less than sympathetic, but ours had their own experiences with their full-term babies and reflux, so they were completely understanding and proactive in trying to help us make our babies feel better.

So, here’s my take on reflux in preemies. It does exist, and it’s probably more likely and more severe in preemies than in the average term baby. I think if holding the baby upright, changing formula, etc. don’t work that it’s logical to try some of the medicines available to parents. And if your pediatrician isn’t listening to you, then you may want to rethink your pediatrician because over the next few years, you will probably have a number of preemie-specific questions and concerns. You want to know that your doctor is supportive and willing to help you as you navigate Preemie Land.

This Moment in Time

Isn’t life full of odd coincidences? Like the fact that my babies were born nearly a month apart in terms of gestation, yet they were only a hundred grams apart in weight? One was in the 80th percentile, while the other was in the 5th, and they met at 2.5 pounds. It’s like that with their therapy. My son has two physical therapy sessions and four speech therapy sessions left before he turns three and ages out of the state’s early intervention services. We have just had my daughter assessed, and she begins her physical therapy exactly as my son finishes. In fact, she will have the same therapist, and she will take her brother’s time slot. How bizarre is that?

Therapy and growth concerns and discussions about meeting developmental milestones have taken over my self-centered concerns about my professional development. My life has revolved around these two preemies for the last three years. I won’t lie–it has been so difficult in many ways. There have been days that I thought I was a terrible mom and I had so much to learn. Other days my husband comes home to a clean house and to the baby sleeping and to my son on the floor with me painting pictures, and I smile at him like, “Hey, not only did I keep the kids alive today, but dinner is on the stove, the house is clean, and we’re having fun!” When I take a step back, I’m not even sure what my life will look like when I don’t have tiny babies. My son’s physical therapist probably knows him better than most people in this world–she has seen him for one or two hours a week since he was a six-month-old trapped in a newborn’s body. Now, he’s running and laughing and filling all our lives with such joy. As she starts all over again with my daughter, I wonder what our life will look like when we’re done with having preemies, when our kids are big and healthy and all this is a blur?

I feel at a crossroads in my life where I’m not sure which direction is right, but I know I can’t leave all this behind. It has been totally and overwhelmingly life-altering. I’m still a little silly. I’m a total nerd, and I love reading a good book almost more than anything else. I love food and growing food and being outside. But, so much of what I’ve always thought made me Summer is in the background now. I am the mother to two preemies. We have therapy and talk about the next milestone to meet. I rejoice in their health and happiness. I worry about the next hurdle, and I change lots of poopy diapers. I cannot imagine not having more children, not having more preemies, ending this phase of my life, even though I know we have been told we should never have more biological children. When I allow myself to go to an alternate universe, one in which I’m not careful and practical and I throw caution to the wind to try once again to have a full-term baby, I simply cannot imagine it. I imagine us back in the NICU, seeing all our favorite doctor and nurses and laughing at the ridiculousness of having a third preemie. I know it would irresponsible to have another tiny baby, and I know my husband and I are too afraid of all the things that could go wrong. We know how fortunate we’ve been, and if you keeping pushing your luck, eventually it runs out. I just mean that I am so changed that I cannot even imagine having a baby any other way than the NICU way.

So, again I wonder at all the coincidences and the happenstances that have brought us to this moment in time. I believe in the order of things, that even life’s chaos has an order we don’t fully understand. I have to believe that as an otherwise perfectly healthy woman, I have been chosen to have these tiny babies and to live these experiences for a reason. I feel like I’m on the verge of seeing the big picture, but I’m not there yet. Instead, at this moment in time, I’m still in wonder that these beautiful children are mine and in awe of the journey that has gotten us here. And in shock that it has all happened to us.

The Simple Things

I follow a blog of a woman who had a 25-weeker several months after I had my first preemie. Her daughter had so many scares and such a long journey that it made me grateful for our own 91-day NICU stay. I was so emotionally invested in her daughter living. Sometimes, it was like I could actually feel the pain of her words.

It’s like a woman who almost lost her twin preemies said to me today, “You don’t know stress until you’ve had a baby in the NICU.” Once you’ve been there, it takes so little imagination to go right back.

Anyway, back to the blog I follow. One of her recent posts was about how tough she is about some things–like medical procedures–that should be traumatic, but then she cries at seemingly mundane moments in her daughter’s life. I knew exactly what she meant! I’ve had to hold both my babies down for a variety of shots and exams, and I always kept my cool. But, I’ve teared up more than once just watching J run across the yard. Because he lived. Because it took months and months of physical therapy. Because he looks so normal now. I know every mom thinks her kids are miracles. They are. But there is just something different when you’ve worked so hard for every milestone. Sometimes, I just stop everything I’m doing. I look at him, and I celebrate where he is right now. I mean he was 2 pounds 34 months ago, and now I can sit on the deck and watch him run.

RUN.

For this, I am so grateful. Before J, I never appreciated the simplicity of walking, talking, eating, and drinking. We are all miracles. But, when you’re a NICU Mama and you’ve come so close to losing everything, the simple things just aren’t so simple.

The Two-Month Screaming

M is nearly five months old, and she was terribly fussy last week. In most areas of development, I think she’s about at 10 weeks old. My son went though a month of screaming at night, and my husband and I learned that his problem was being overtired and not knowing how to soothe himself. He simply could not relax and fall asleep. His arms and legs were jerky and fidgety, and we tried everything to wind him down at night. The only thing we found that even remotely helped was putting him in his carseat, plopping it into the stroller, and pushing him around and around our house until he fell asleep. I know every parent has stories of the ridiculous, so you can relate. But, how silly is that, pushing your baby in a stroller around the house for hours at night?! I think part of his problem was that his mind was far less delayed than his body, and I think it didn’t help that he’d recently come home from a busy, bright, and loud NICU environment to a quiet home. But, more than anything, he was just overtired. He still has a tendency to sleep less the more tired he is–sleep experts say this, and even though it seems counterintuitive, it’s so true for him. So, this time around, I told my husband that M probably just needed a bedtime and a regular sleep routine in her own bed. When babies are tiny, it doesn’t seem to matter to them whether they’re in a swing or a pack-n-play or a bassinet or a crib, and it doesn’t seem to matter what time of day it is. Sometimes, M would fall asleep in her bouncy seat while I was cooking dinner or in her swing while I was playing with J, and all her naps were fairly short and random, just whenever she happened to be sleepy. But, suddenly it very much mattered to M where she was and what time of day it was. Last Wednesday, she went nearly 12 hours with only one 45-minute nap, and then she screamed and screamed at the end of the day because she was WAY overtired. (I think I did some screaming and crying of my own that day too.)

I’m sure most babies go through a similar transition, but one thing I’ll most likely never know is if it’s different with preemies. Is it harder for parents of preemies because we never know exactly where our kids are developmentally? Are NICU-grads more likely to favor loud, bright environments because that’s what they know? Is it harder for preemies to get used to a quiet home environment? Or is this really more my parenting and my babies? All my pediatrician could tell me was that most babies have a peak in their crying around two months, so I figure that’s probably true for my babies too, if you correct their age for their prematurity.

The good news is that last night I had both kids in bed by 7, and the house was so quiet and pleasant. And both kids woke up this morning so happy. Isn’t sleep amazing!

Mothering on Mother’s Day

Today is Mother’s Day. Most days, I am overwhelmed by poopy diapers and cleaning up toys and fitting in chores between caring for two little ones. But, today I am overwhelmed by gratitude. A mother gives birth to a child, but not all mothers get to actually mother. Some mothers lose their babies, some mothers are separated from their children, and some mothers choose to let others mother.
So, my individuality is languishing. My hobbies consist of watching TV while I do a chore and falling asleep on the couch while I watch TV. Gone is reading, gardening, cooking, and spending time with friends; those all take time and energy I don’t have. My world’s axis is my children; nearly everything I do in a day revolves around them. But, this is such a fleeting phase in life. It’s a shame you’re too tired to really appreciate all the miracles that happen everyday.
When my children were in the hospital, I lamented that the care I gave them was a fraction of their day; it was the nurses mothering my babies. So, today when I’m up to my elbows in poop—maybe literally?—I choose to be grateful for the mundane. We often take for granted what we’ve come to expect. Three years ago, I was a different person, but now? Now, I just can’t believe my good fortune because I have two kids waking me up at night, and even though I’m exhausted, I’m thrilled to be doing their mothering. I’ll cling to that thought at the next 3 am feeding!