Then and Now

I don’t want my kids to Google their names in ten years, and a blog comes up with stories about how fragile they were with pictures of their suffering. So, I don’t use their full names on here, and I probably won’t share loads of pictures. But, today is a celebration of sorts because my daughter is now six months old, and soon my son will be 3. They are both so adorable and funny and HEALTHY. For moms just starting this journey, I know you dream of big, fat babies and wish with all your heart that your tiny baby you can’t even touch was chubby and huggable. I used to wonder if my day would ever come. Now, I look at these two beautiful children, and yes, my day is here! So, as some encouragement, here is how my tiny babies started:

Miraculous, isn’t it!!

Opening the Journal

Last night, I finally got the courage to read the journal I kept while my son was in the NICU. For three years, I’ve avoided it, but it wasn’t as painful as I thought it would be–probably because we just spent another two months in the NICU. For some reason, the first NICU stay was terribly traumatic, while the second stay was difficult but in a weird way also like a reunion. We had so many more friends there the second time, and the doctors and nurses treated us with respect, probably because we were on our second tour. And we were much more patient and understanding of the routines of the NICU and all the waiting you have to do.

So, the only part of the entire journal that really got to me was reading my very last entry:

“Oh, you sweet little boy, I can’t even begin to think about all the things we’ll do together and all the fun we’ll have because it breaks my heart to wait even one more day. I hope you know you’re loved, that we only want what’s best for you, and that we can’t wait to show you life is so much more than the inside of a hospital. Let us pray today is the beginning of the end because I am just raw with missing you. Love you, Angel. –Mom”

J came home six days later.

If you can bear it, keep a journal while you’re in the NICU. I think we did an even better job with my daughter, but we tried to document all the high and low points for both kids. We even kept a tally of their weight day by day and a list of all the nurses they had. I hope their journal is a window into their beginning for them, and while they were in the hospital, it gave me an outlet to express some of my hopes and fears and also to keep busy while I was sitting by their isolettes.

Even if the NICU stay is gut-wrenching, you can take however long you need before you open those pages again. Maybe you never do, but I think a journal gives our preemies an invaluable understanding about where they come from and why we are the way we are as parents. Are parents of preemies still a little different when their kids are big? I don’t know. But, I know I’m a different person from the woman who started this journey three years ago, and I hope for my children that the journals I kept for them will be a reminder of my love for them, even in their earliest days when they didn’t weigh as much as a bag of grapes!

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 Giving End

I just gave away 650 ounces of breast milk. Before the week is over, I’ve committed to giving away 1500 ounces. It has been one of the most moving things I’ve ever experienced, and it’s also much harder than I ever anticipated.

My son never thrived on breast milk alone, but I was able to give him about half milk/half formula for his entire first year. He is phenomenally healthy–this last year he didn’t go to the pediatrician for a sick visit. At all for the entire year. It is beyond what I ever imagined for him. Because I was unable to do so many things for him, I’ve hoped that at least my milk helped him develop a strong immune system.

My daughter has been a different story. She was fine until she was about two months old (and two weeks from her due date). She had a reaction to the fortifier they add to breast milk to increase its calorie content. Then, she was unable to take any formula supplement and finally even my breast milk, probably because of a milk protein allergy. So, after a dairy-free diet failed to work and we discovered that soy too was a problem, we put her on a special formula mixed at a higher concentration to help her grow and gain weight. Thousands of ounces of breast milk just sat in the deep freezer.

I’ve just started trying to reintroduce her to a small amount. Our pediatrician said that she will get the immune benefit from just several ounces of breast milk a day, so I’ve made that our goal. I’d love it if she could take more, even up to half of her feedings like her brother did. But, in the meantime, I’ve started to worry about all that milk just sitting there. What if our deep freezer shuts off (as it has in the past) and we lose it all? What if I wait too long, and donors and milk banks don’t want it? What if my daughter never takes any of it, and I’ve hoarded it for no reason?

So, I posted on a Facebook page meant to match up milk donors and recipients, and within hours I was swamped. I had 14 requests in 24 hours, nearly all of them with a heart-twisting story about why they desperately need milk. One mom has polycystic ovarian syndrome and doesn’t produce milk. Another isn’t producing enough for her preemie. A couple of moms have adopted babies and want them to have the same health benefits as other nursing babies. The most moving was an adoptive mother whose 13-month-old was born as a preemie addicted to drugs with numerous side effects. The little boy can only tolerate breast milk–if he doesn’t get it, he will have surgery to implant a tube into his gastrointestinal tract to bypass the nutrition past his stomach. The mom has even undergone hormone therapy so that she produces a small amount of milk, but the bulk of his nutrition has depended on milk donations for the last year.

I feel overwhelmed by the need, by the stories, and by the conflict going on inside my own head. On one hand I want to give all that I have to give, and more. But, on the other hand, I have this compulsive need to stockpile the milk and to safeguard it for my daughter, even though there is no guarantee that she’ll ever eat it. I am overcome with the gratitude of women thanking me for just considering donating–not to mention the love I have received in return for sharing my milk. It is truly one of the most amazing and surprising things I’ve ever experienced. It’s like I’m donating a kidney or something! And yet, I look at my daughter, and I hope I’m not shirking her.

I know I’m doing the right thing. I know it. And I’m so thrilled to see my milk go to good use. I love the fact that a series of unfortunate events collided, bringing me to some wonderfully kind strangers who love their babies as much as I love mine. It has been a blessing for me to see some of my disappointments turned into gifts of love to other babies. But, after all I’ve been through emotionally with these two babies, how in the world can something I thought would be so simple and so easy be so emotionally draining?

A good friend of mine said this is proof of how we’re all connected. Sometimes, we are fortunate enough to have just what someone else needs, and I’m so glad to be on the giving end.

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!

The Gray Area

Today, while I was observing my son at his preschool, I had a conversation with a mom of twin preemies who also attend the school. Born at just 24 weeks, they were given little chance of survival. In fact, the mom told me that the cut-off for intervention at that particular hospital is 24 weeks. Had her babies been born just two days earlier, the staff wouldn’t have tried to save them–and they told her that. I was struck by the absurdity of such a policy! I was surprised they didn’t offer to transfer her to a nearby hospital that would intervene, because a couple of excellent NICUs in the area do take babies at 22 and 23 weeks. Each hospital has a protocol for deciding when to intervene. At some point the likelihood of a baby surviving is so minimal and the fight for survival is so painful for the baby that doctors and nurses believe it’s not in the best interest of the baby to resuscitate, and since babies that tiny cannot breathe on their own, they simply can’t survive. I’ve seen babies struggle in the NICU, so I understand. And the reality is that even with the best medical advances available, there is a point when a baby simply cannot survive outside of the womb. But, then you see 24-weekers who are healthy and strong at age 2, and you wonder if drawing a line in the sand isn’t misguided. Shouldn’t it be based on the health of the babies? If a baby born at 23 weeks and 6 days is healthy and capable of being stabilized, shouldn’t that baby get a chance at life? I know the dividing line between death and viability outside the womb is a gray area somewhere around 22 weeks, but I’d hate to think that a child that could survive wasn’t even given the opportunity. And as with so many medical ethics questions, it feels so much like playing God to decide who should live and die.

I don’t even know exactly what the right answer is. All I know is that I’m so thankful both my preemies made it past that gray area, and I’m so grateful for their health. I was overwhelmed looking at not one but two healthy toddlers who but for a few hours might not have lived. NICU stories never fail to be miraculous!