Thursday, November 20, 2014

An Essay by Preemie Mom - Mary

Today, I am excited to share an outstanding essay with you, written by my good friend, Mary, who happens to be a preemie mom. Her essay is part of a series that I am publishing on the Preemie Blessings blog in honor of Prematurity Awareness Month.

Mary had a late preterm baby when she was nearly 36 weeks pregnant. Her essay is full of helpful information, as well as some humor. I hope you enjoy reading it as much as I did!

Somewhere In Between . . .

Photo Courtesy of Mary
When my good friend and blogger, Michelle, asked me to write about my preemie experience, I felt a bit sheepish. Yes, my daughter was born just shy of 36 weeks and was technically premature, but my (and my daughter’s) experience was vastly different from that of Michelle’s and her daughter, Emily. Our story wasn’t even close to those of my other friends who also had preemie babies: they all had stays in the Neonatal Intensive Care Unit (NICU) and some had months of physical therapy and specialist visits and infant helmets and feeding tubes. We didn’t endure any of those things. If anything, my daughter was just born on the small size so I felt like our story would have nothing to add to this blog. However, when I started thinking about my daughter’s birth and the first two years of her life, I realized our story did differ from the birth stories of my friends and family who had full-term babies, which I later confirmed when I had my son after 40 (long!) weeks of pregnancy. Looking back, I now know that, even though we had no major complications from my daughter’s premature birth, there were extra challenges and worries that came with having a “small” baby for which we were unprepared—from the little things like not having any newborn clothing that fit to eating and sensory issues with food when her teeth came in late. In other words, our birth story was somewhere “in between” a truly premature birth and a routine, full-term birth. So for what it’s worth, here is our story starting with the first thing for which we were unprepared: the surprising and dramatic way in which my daughter would make her grand entrance into our world! 

I was 35 weeks, 5 days into my extremely average (and extremely boring) pregnancy when we went to bed one evening after attending a baby care class at one of the local hospitals. It was one of those classes where you use life-like dolls to learn how to bathe and diaper an infant. I was slightly concerned because my husband had somehow managed to break off our doll’s arm while putting on a onesie but I figured it was okay because we had another month to practice. And I was feeling pretty excited because our nursery furniture had just been delivered the day before and I couldn’t wait to start nesting and getting things ready. We also had our 36 week ultrasound in a few days and were interviewing pediatricians at the end of the week. Around 3 o’clock that morning, though, I awoke suddenly panicked that I had finally lost all control of my bladder. My water was breaking! In my bed! (they never show that on TV or the movies!). After convincing my husband that this was no “accident,” he immediately started to panic and threw on his clothes from the day before to get us out the door and to the hospital. I, on the other hand, was surprisingly calm. I wanted to wash my hair.  I needed to pack my hospital bag. I needed to do some laundry. And I wasn’t having any contractions. After getting the okay from my doctor, I put in a load of laundry and took a shower and started cleaning up around the house before my husband insisted we leave. Deep down I knew my calmness (and resistance to go to the hospital) was actually fear. It was too early for my daughter to be born and there were no signs other than my water breaking that I was in labor. Something wasn’t right, but I didn’t know what it was. I asked him for another minute to just “take it all in” because, whereas he would be coming back to the house later, I didn’t know when I was coming back or whether our daughter would be with us. 

We finally got to the hospital at 5 a.m. and I was immediately hooked up to a fetal monitor which showed that I was having some very minor contractions (so minor I couldn’t feel them) but no dilation. The doctor started me on Pitocin to speed the labor process up. After a few hours, there was still no dilation and I still could not feel any of the contractions. Unfortunately, every time I had a contraction my daughter became distressed due to the lack of amniotic fluid to act as a cushion. At that point, I had to get a uterus catheter to continuously pump fluid into (and then back out of) my uterus and was confined to the hospital bed. After another couple of hours of uncomfortable misery with the catheter (and still no dilation or strong contractions), I asked for an epidural. That helped me relax while we waited for the Pitocin to work. Finally, after 15 hours of nothing happening, my doctor came in and had the “talk” with me about a possible C-section. Knowing that they wouldn’t let me go 24 hours after my water broke (and with nothing happening), I had already started preparing mentally for a C-section. We were going to wait, though, for a few more hours to see if I would go into labor on my own. I sent my husband back to the house to feed our cat and get some extra clothing, but we didn’t get the chance to wait. I started to spike a fever and the doctor worried about infection so I was bumped to the front of the line for an operating room.  My mother made the frantic call to my husband to get back to the hospital where the nurses met and dressed him in scrubs in the hallway.  Twenty minutes later, my daughter was delivered via C-section approximately 18 hours after my water broke.  

A team from the NICU was present in the operating room and immediately took her from the OB for inspection and testing before I could see her.  But I (and the rest of the floor) could hear her: she was a screamer! One of the NICU nurses told my husband later that once they heard her “strong” cry, they knew her lungs were good and she would not need to go to the NICU.  But she was thin—although she was 19 ½ inches long, she only weighed 5 pounds, 7 ounces.  During our five day stay at the hospital, her weight would drop to 4 pounds, 9 ounces.  Luckily, she was back up and over her birth weight by the time she did her car seat test (which she passed with flying colors!).  She also passed her hearing test which, given her premature birth, was one of the most stressful two minutes of my life. 

Photo Courtesy of Mary
Once we were cleared to go home, we had some immediate and practical problems. I had received numerous and adorable newborn outfits as gifts but all of them were too large and literally engulfed my daughter potentially smothering her. We had to send my mother to Babies R’ Us to buy all the preemie clothes she could find that would properly fit around my daughter’s neck and body. Because she was so long, though, all the preemie clothes were too short; hence we had to do a lot of creative layering. Another problem was the weather. It was summertime and we were in the middle of a record heat wave. Because she was so thin, my daughter could not regulate her body temperature like other babies. That meant no walks or lounging outside. Also, because her immune system was immature, we were advised not to take her out to public places. That meant confinement to our 900 square foot condominium. In the first eight weeks of her life, I (as her food source) only left our condo for a total of six hours—most of which were for her pediatrician appointments.   

However, our biggest challenge during the first six months was my daughter’s weight. I was committed to breastfeeding which was difficult given her size and (like most preemies) her propensity to sleep. With help from the lactation consultants at the hospital, we were able to get her to latch and nurse (albeit very slowly). She still needed formula to supplement my colostrum but things were going well until I learned I had contracted Clostridium difficile or “c-diff” (one of those nasty intestinal bugs lurking in hospitals!). I would need to go on powerful antibiotics for 10 days. There was a debate among my and my daughter’s doctors about whether I could breastfeed while taking the antibiotics and, in the end, it was decided I would wait until I had expressed all my colostrum before beginning the medication and temporarily stop breastfeeding. In order to pick-up with the breastfeeding when I was done with the medication, I had to “pump and dump” every time my daughter had formula, which was 8-10 times a day. That meant that I was not only getting up every two to three hours to “feed” my daughter, but so was my husband. When I was finally able to breastfeed again, we had to have a lactation consultant come to our home to help my daughter (and me) learn to re-latch. We also had weekly visits to the pediatrician to monitor my daughter’s weight for the first month we were home. Luckily, even though she was thin, she steadily and constantly gained weight.  We got our own baby scale and with instructions to call if she stopped gaining or dropped in weight, we were told not to come back until her two month check-up. 

At two months, we were giving the green light to take her out (with the caveat not to let her get too hot or too cold and to avoid germs as much as possible). Her weight, although stable and increasing, was still low enough (10th percentile) that the pediatrician recommended we spread out her first vaccine shots. That was fine, but it meant that her next round of vaccines would be pushed back until after we were scheduled to fly to Chicago to attend my best friend’s wedding. Being paranoid about germs and dirty airplanes, I immediately started to worry if she should go on this trip (I was the maid-of-honor and had to go but did not have enough milk saved to leave her for two days). Determined and armed with a case of antibiotic wipes and three bottles of Purell, I packed up my husband, mother and baby and successfully braved the elements (and even got to have a bit of fun in between feedings!).

At six months we started solids.  My daughter loved pureed sweet potatoes and green beans but when we tried to switch to more “solid” foods, we got push back.  Most of our friends’ babies got their first tooth between six and eight months.  Our daughter’s first two teeth did not erupt until after she was a year old.  The next two would not come until she was 18 months old and the rest not until she was two.  I learned later that this kind of delay is common in preemies. Obviously, having no or few teeth made it difficult for her to chew or bite any kind of solid food, especially vegetables and certain kinds of fruits. For a while, she was also adverse to many “soft” solids like pasta and would (and will still) not eat any foods that are mixed together (which caused a not-so-pleasant showdown with one of the caregivers at her daycare about whether we could send in easy to eat foods). We consulted our pediatrician who recommended a sensory therapist if her eating did not improve. We decided to wait it out, though, and were relieved when her eating dramatically increased after her teeth came in.  We were even more relieved when at the age of two, our pediatrician told us that our once tiny baby was “all caught up” and there should be no other issues or problems from her premature birth. 

Today our bright, funny and strong-willed “preemie” is four going on 14. You would never know to look at her that she started out as a preemie. Reflecting back, I did not appreciate how stressful those first few months of her life were until I had my son a few years later. Although my pregnancy with him was fraught with complications (due, in part, to all the extra monitoring I received because of my daughter’s unexplained premature birth), his birth and subsequent care were incomparably easier than his big sister’s. Not only was I a second time mom, but we did not have the constant weight checks, the nursing and subsequent feeding issues or the confinement to our home. I was also physically healthier in that I wasn’t trying to recover from a debilitating infection (on top of recovering from a C-section). Another upside with his birth was that I was able to go on maternity leave when planned. Due to my unexpected departure from work when my daughter was born, I had to respond to emails and calls from my office my first month home as I was trying to recover from surgery and my infection as well as get my daughter to nurse properly. 

So, although my daughter’s birth was the greatest moment of my life (I became a Mom!), I am sad that most of my memories from those first few weeks are of my meds schedule (at one point, I was taking six different pills or supplements 2-4 times a day), the endless pumping and dumping (which for any mother who has done this, knows how heart wrenching it is to pour precious milk away), the nursing struggles and having to constantly pull out our baby scale. Not to mention that, like most mothers of a newborn, I was exhausted from the lack of sleep. I spent most days confined in the house feeling overwhelmed and helpless, particularly since the “extra” challenges we were going through were not readily apparent to anyone but our immediate family. Most of our friends and family only saw the adorable Facebook pictures of our beautiful, albeit tiny, daughter. 

That is why my advice for other preemie moms is to know that you are going to feel overwhelmed and that’s okay. Know that you will have hard days and rough patches but they will get easier. Know that things may be more difficult or take longer, but eventually, you will get there. But most importantly? Ask for support. I know it is hard to reach out to people and ask for help. No one wants to be a burden, but I assure you, there are friends and family who are out there who want to do whatever they can to make your life a little bit easier--whether it is bringing you meals or keeping you company in the NICU or doing your laundry. Let them do what they can. They love you and they love your preemie, and they want to help.  

Finding a group (whether in person or on-line) of similarly situated moms to share stories with and ask advice will also be a godsend. When I did finally get to leave the house with my daughter, I met up every week with the moms from my prenatal yoga class who also had newborns. While we nursed, we discussed everything from baby products, to the best sleep schedules, to mastitis and, most importantly, how much coffee could we drink before our kids would get a caffeine buzz.  In addition to my mother (whose help was immeasurable),  I credit these women with saving my sanity and, over four years later, am blessed to call many of them my good friends. Without their and our families’ support, I’m not sure how my husband and I would have survived that first year. Their love and assistance not only gave us strength but also enabled us to care for our preemie and her extra needs without distraction or unnecessary burdens. Being able to stay resilient and focused was the best gift they gave our daughter and us. 

And one last thing, remember--no matter what anyone else says-- it is never too early to pack your hospital bag! ☺


I'd like to thank Mary for sharing this heartfelt essay with us today. I'd also like to thank Mary for being a loyal friend who has been there for me in both good times and bad. Mary knew exactly what to say to me during our NICU journey -- and even made me feel like a mom with a new baby while we were still in the hospital. She went out of her way to find beautiful micro-preemie clothes for Emily and a personalized blanket to cover her giraffe during her NICU stay. I am thankful for her continued love and support -- and for sharing her preemie blessing story!

If you liked what you read today, and don't want to miss future tidbits, challenges, and interviews with preemie parents during Prematurity Awareness Month, then don't forget to follow me:  Email Subscription |Facebook | Twitter | Instagram | Google+

1 comment:

  1. No matter when the babies arrived, at 24 weeks or 35, it seems all of you preemie moms have gone through a lot of the same kinds of experiences, trials, fears, and triumphs. You are a special group of amazing women!