I am only able to write from my own experience; so from time to time I like to bring in guest writers to share on topics I don’t have experience in.
The day after my son was born, my friend Stephanie delivered her gorgeous, preemie princess.
Motherhood is HARD, and every story is different. This is Stephanie’s.
-The Modern Homemaker
My dear friend from childhood asked me to write a blog about being a first time mom and my experience with having a preemie baby and what a different life it is from the expectations that come with a full term baby.
When I was first approached to write this blog I was honored and excited. As the days passed and I mulled over in my mind what I wish I would have read in other preemie mother’s blogs, I began to realize why so much was left out. As a new first time mom, especially a mother of a preemie, the last thing you want from people is pity. You bring it upon yourself all on your own. You also don’t want people to think you’re complaining or depressed or that you’re not loving every single moment with your child. Because while there are so very many difficult and challenging times, I wouldn’t trade it for anything. I’ve always lived my life with a very open, raw look at things and this blog will certainly not be any different. I won’t cover the NICU, because that alone deserves a separate monologue. Through this journey I have become friends with several fellow NICU mothers. I know that not one preemie road is the same. Each of us has had struggles and continue to struggle with different things. I have learned that through watching these other moms wrestle with the realities and nightmares that follow a preemie long after the NICU, there are no words to describe my love and admiration for them.
Before I jump into it, I want to briefly explain what the complications were with my daughter and what caused her to be premature. My pregnancy alone was a long difficult journey even with it being cut short. At twenty weeks into the pregnancy, at the usual anatomy scan that every baby gets, Harper-Ensley was measuring small. As time went on, her growth began to slow drastically and we were diagnosed with IUGR which stands for intrauterine growth restriction. In addition to this, her doppler flows began looking diminished. Dopplers measure the flow of blood to and from the placenta and the baby; when it is reduced or reversed it means the baby is not receiving the nourishment it needs to grow and survive in the womb. There were also times the flow was reversed. At one point she nearly had to be taken out at 28 weeks. I was admitted at that point into the hospital and we managed to make it miraculusly to 34 weeks. This time in Antepardum was filled with daily ultra sounds, Doppler flow readings and NST’s. Two days before her day of birth, we were told she had dipped below the tenth percentile and needed to come early. The doctor felt she would thrive better outside of me than in. (This is where the self-inflected pity and guilt come into play) The truth is, that her head was measuring at 15% while the rest of her body was at less than 1%. A baby at 34 weeks is usually 4 3/4 – 5 1/4lbs. On February 1, 2017, my daughter Harper-Ensley Rowan Nelson was born weighing 3lbs 10oz via c-section because she was too fragile and couldn’t handle a vaginal birth. My husband and I got to see her and her tiny body briefly before she was rushed up to the NICU.
I’ll never forget seeing her little self for the first time on the baby scale just to my left. I vividly remember how confused I was as to why her skin looked so dark. It was later brought to our attention that she was looking blue-ish grey because of the lack of oxygen she was getting. After 3 weeks in the NICU, which involved oxygen tubes in her nose, feeding tubes down her throat, wires stuck all over her body, an IV in her arm, purple toes for a week, a 3 day stint under blue biliruben lights, and living in a plexiglass box for nearly her entire stay we were able to take our little baby girl home.
The first few days after giving birth to Harper-Ensley my hospital room was filled with beautiful congratulatory flowers and stuffed animals, some were even sent to our house. Some very special people to Jason and I from out of town bought us a sushi dinner that we were able to squeeze in late one night after a NICU care time. Two people offered to make us dinner to bring by the house but we weren’t able to take them up on it because we were always at the hospital. When we finally got her home, she was like our newborn baby. She was actually our tiny 4lb newborn baby! Our house was completely void of flowers, gifts, or pre-cooked dinners. To the rest of the world our baby wasn’t new. She was 3 weeks old, yet still 3-5 pounds smaller than full term newborns. Jason and I were able to spend 2 days together and then he needed to go back to work because he had taken time off right after her birth and extra hours here and there to spend care times at the hospital. (Care times in the NICU happened every 3 hours and were the only times we were able to hold or interact with our baby. The nurses kept the interaction times very limited even during care times.)
Upon discharge, the doctors and nurses told us to maintain these care times and that holding her and interacting with her more than that (approx 30 minutes) could cause her to not gain weight due to stress from overstimulation. So here we were beyond thrilled to have our preemie princess home but completely overwhelmed with no outside help from anyone. There were no dinners brought by, which meant Jason needing to stop and pick up fast food on his way home from work or he would have to cook when he got home, and my lunches consisted of whatever I could scrounge up within 2 minutes. I don’t want to sound like I’m complaining or ungrateful for the thoughtful gifts the days after she was born, but it’s just one of the dozens of things people don’t understand about having a preemie.
I think that those first few nights with the baby home for any new parent are pretty frightening and stressful. I know I’m not alone in feeling the need to check if my baby was still breathing every 10 minutes while she was asleep. I’m told its normal. As a preemie mother we learned that your best friend in the NICU is that monitor that sat next to her isolette always worrying you but giving you comfort with it’s non stop beeping. You stare at it for hours upon hours every day, watching your baby’s respiration rate, heart rate and saturation levels. There becomes a sick sense of comfort you find in the beeps and dings. Standing beside her crib at home is terrifying because you have no reasurrence that she is getting enough oxygen, or if her respiration rate is at a good level. All you have is your husband who is silently just as frightened as you, and your faith and the constant prayers to God that He has become all to familiar with hearing.
I was “fortunate” enough to know that we were going to have a preemie and I knew that having a preemie would mean having to stay on house arrest, being addicted to hand sanitizer and doing all we could to keep her healthy. Even being extremely cautious, even making visitors shower and change into clean clothing before seeing her, she has had one round of antibiotics and has gone 5 weeks straight with a low grade fever. Her doctor took her blood during the last sick visit and said her platelets were up. Since she had already been on antibiotics, we had to let her body just ride it out. Preemies don’t have the ability to fight off illness like term babies because of many factors. It’s not just because of their early arrival and minimal amount of antibodies, but it’s also their lack of body fat. Anything that makes our baby girl burn more calories than needed is critical to her health. So it’s this battle of letting her body get stronger, but not pushing it too hard to where she suffers. Even now, she still suffers from fevers on and off.
During pregnancy, I was dedicated to breastfeeding. I had read up on how terrible it is at first and painful it can be but I knew I wanted to do it. I knew I could do it. When we knew around 20 weeks she would come early, I was extra committed to it because the antibodies in my milk were vitally essential to her growing up as strong as possible. In the NICU, we got to work on breastfeeding and she was actually really amazing at it. But the doctors limited her to 10 minutes max and only once a day. It was so disappointing to hear that after 10 minutes she would be burning more calories than she would be taking in. Within 2 weeks of being home from the NICU, I went to pumping exclusively. Pumping in and of itself is miserable. What’s worse, is having to do it every 3 hours, and not being able to console your crying baby if you’re hooked up. My ideal of this sweet, amazing, skin to skin bonding with my baby felt like it was not only taken from me, but my cuddle time during the day with her is limited due to the necessity of pumping after EVERY FEEDING. Often times I won’t hold her or let her fall asleep on me because I know I’ll have to put her down to pump. She is now a bit over nine and a half pounds and I’ve tried to breastfeed her just to see if maybe we could make it work. She screams and cries in frustration because she can’t get enough milk quick enough and that broke my heart to tears. Two weeks ago I was so blessed to receive about 4,000 ounces of breastmilk from a donor because my celiac disease symptoms started coming back with a vengeance and I needed to get back on my medication. Unfortunately I can’t feed Harper-Ensley my milk while i’m on it. I am proud to say I exclusively pumped and provided for my daughter for 5 full months! Regardless of how difficult it was, it was worth it and I would do it again.
Our baby has never been good at burping, still isn’t. She also never spits up,which is kinda awesome. Approximately ten days after being discharged, she suddenly started having hours of non-stop screaming especially in the early evening. This would lead my husband and I to passing her to and from each other, bouncing, singing, rocking, trying anything to comfort her. Bath times, which she used to enjoy suddenly became a scream fest. What happened to our “perfect chill” baby? She began clenching and straining and would go days and days without pooping. I knew that often times preemies have tummy problems, yet this was a new thing. My husband and I were just praying that it wasn’t the all-dreaded colic. I called the doctors office and the nurses didn’t seem too concerned with the non pooping. Finally, when she had gone ten days without pooping and after many many calls to the doctor we got an appointment. Her pediatrician (who we love) said she has silent reflux. While she doesn’t burp or spit up, the gas just burns her esophagus causing her pain. He also recommended that we use suppositories if she goes 5+ days without pooping and prescribed Lactulose to help stimulate her bowels naturally. She is now on medication twice daily for the reflux and three times daily for her lack of bowel movements. Even on Lactulose we still have to give her suppositories every now and then. Seeing your tiny baby in pain is miserable, and shoving medicine down her throats daily isn’t much better. It is something that needs to be done, and we are thankful it was nothing more serious or that required more than just medication to treat.
Our 3lb 10oz baby at birth is now a whopping 9-ish pounds!!. She is 5 1/2 months old, and her adjusted age is 4 months. Her doctor said that if she was actually 4 months old, she still wouldn’t be on the growth chart. So even if she had made it to term, she would be tiny. There are babies who were born pounds less than her that are close to catching up with her already. Because Harper-Ensley was an IUGR baby her growth has always been slow and behind so even outside of the womb she will continue to trend that way. She is absolutely adorable, but her cute small size leads to everyone asking how old she is. My answer of 5 1/2 months always leads to explaining that she was a preemie which then leads to more questions because they always comment that she must have been really early or really tiny. While she was early and tiny, she really wasn’t all THAT small or THAT early. Of course, everyone is very kind with compliments on how cute she is and strangers tell me “she will catch up before I know it”. Um, yeah I know she will, I wasn’t really concerned about her size. Im just thankful she’s mostly ‘healthy’, but thanks…I think? Sometimes I just want to be a normal mom in the crowd. I want to pretend I’m not completely exhausted from having a baby that still wakes up every 2.5-3 hours nightly because she’s still the size of a newborn. I don’t want to have to explain why she came early, because our pregnancy and NICU stay was really emotionally challenging. Strangers are so invasive and ask if I’ll have another child or if my body will always have these “problems”. I’ve been asked if there is anything I could have done differently through my pregnancy to prevent this. Even just writing this gets me choked up. If people only knew how many doctor appointments we went to. On a daily basis throughout our pregnancy, I had to count kicks, because if she wasn’t moving enough, it could mean that she wasn’t getting nutrients. To make it worse it was up to my discretion to decide based on her ‘ activity” levels if she was alive and ok. If there was ANYTHING I could have done to help her, I would have. But sometimes the body does what it wants and God said this was our path. I’m 28 years old, newly married, healthy and yeah I wanted more than one child. The odds of me having a normal pregnancy are slim to none, so this question hurts. It really does. Not only because I don’t think I could handle going through this again, but my husband doesn’t think he can either. We are so blessed and thankful for the baby we have because many times IUGR babies don’t make it at all.
The last thing I’ll touch on is milestones. We all know there’s all these awesome amazing apps about what milestones you can expect your baby to hit around what age. Even if we use Harper-Ensley’s adjusted age, they still don’t line up. She can do some things, other things she can’t. We know it will take her 2 years to fully catch up but watching all of our other friends babies and even her NICU buddies hit milestones that she hasn’t is sometimes very difficult. She’s come leaps and bounds, is the happiest baby, but I would be lying if I said that its always just easy and hunky-dory.
A word to preemie mothers; keep your chin up. You are strong and you are more than enough. God chose YOU to be a preemie mom. Why? I can’t answer that, because I often ask that myself. But He chose you, because He knew you had the patience, the grace, the endurance and the strength to make it through this time.
A word to regular newborn mothers; try your best not to give advice to preemie mothers. They have inner and outer struggles you can’t understand. Their baby is nothing like your normal baby. Preemie moms spend hours and hours trying to figure out what is best for their baby’s condition and needs. They have seen the peditration more times than your child has in the past few years combined. The best thing you can do is be understanding and up lifting. When they tell you how something is and must be, its true and leave it at that.
A word to those of you who aren’t a mom; being a mom, be it to a preemie or a full term baby is a lot of hard work. It’s an amazing, rewarding job that I know none of us would trade for the world.
In conculsion, being a preemie mom is nothing like I expected. But I can also say that being a mom period is not what I expected either. Being a preemie mom is much more difficult than anyone leads on. But being a mother is beyond incredible and amazing and brings more happy tears to my eyes and joy to my life than I even thought possible. The love I have for my precious, beautiful baby girl is so strong and rewarding thats its impossible to describe.
I hope this helps someone find the strength to continue on and answers a question or two along the way. Feel free to follow my blog mrsnelsonsnotes.wordpress.com or contact me at firstname.lastname@example.org if you are having struggles or questions about your preemie challenges and I will do my best to answer what I can or point you in the right direction if I can’t.
God Bless every mother out there and their wonderful families.