I debated for a long time whether I should post this or not. After all, this is a food blog. But I wanted to share my story. I needed to write about it. My NICU story: born 11 weeks early.
When I first ended up in the hospital, there was a resource available to talk to parents who have gone through premature births and NICU experience. I declined that opportunity. Talking meant crying and I couldn’t handle even more tears. Yet, I longed for the stories, I needed to know what other people went through. I spent hours searching online and read about other’s experiences. Those posts provided a lifeline, a connection to the future. To the time when life would go back to normal. To the time when there would be no fear, no sorrow, no grief.
Today is November 17, World Prematurity Day. Today I want to share my story. I hope that it’ll help someone just starting out on their difficult and devastating journey. I hope it’ll bring hope and peace and connection to the future when there are no wires, no alarms, no incubator.
First time I saw my daughter was nine hours after she was born; eight hours after my husband saw her. I was wheeled into NICU a few minutes past midnight and nurses put my tiny baby on me. She hiccuped, I cried. The fact that I technically didn’t see her the day she was born still haunts me.
An hour or two after I regained consciousness following the emergency c-section that I received instead of being at work, a nurse came to ask questions. I barely was able to grasp the conversation still being groggy from the general anesthesia and morphine coursing through my veins. “Are you going to breastfeed eventually?” Yes. “Do you want to rent a hospital breast pump?” No. “Do you have your own breast pump?” Also no, since it was on my baby registry list and I was supposed to have my baby shower in five days. (Note to self, cancel the baby shower.) Well, she said, you have to start pumping as soon as possible. She then looked at me, saw how confused I was and graciously allowed me to start doing it the next day.
That evening I sent my husband home with detailed instructions on how to purchase the pump on his way to the hospital the next day. It was his last night of uninterrupted sleep in a while.
I, on the other hand, didn’t get the luxury of one last full night sleep. I was woken up by the nurse every two hours who took my temperature, measured my blood pressure, checked for signs of infection and fed me pain pills like they were mints or candy.
In the morning I got questioned again about pumping. I tried to hold off the nurse, explaining to her that the store only opened at 10am and that my husband would be here by noon, but she only gave me a little time. Just before lunch she said that we couldn’t wait for the pump anymore. She closed the curtains around my bed, unceremoniously grabbed my breast and started squeezing it. I kept alternating between muttering how weird it was and how it’s too early in my pregnancy and I won’t have any milk. A minute or two later a glistening drop appeared on my nipple; the nurse looked at me triumphantly. Laden with bags and boxes my husband appeared by my bedside just as the nurse started squeezing my other breast.
After the milking session Alan wheeled me to the NICU as I was still in too much pain to walk and we saw our baby together for the first time. I cried. Again. As I’d be crying every time I saw her tiny body in the incubator for many days.
Next week was a blur. I was healing from a major surgery, we were feverishly rearranging our lives to accommodate the unexpected birth of our daughter and re-living and re-telling the story of her arrival dozens of times.
It was a perfectly normal Tuesday, I was on my way to work and I had a routine OB appointment at 8.30am. Later that day I was going to Niagara-on-the-Lake for a work event until Thursday. Alan was supposed to join me for a little getaway on Friday. Saturday I was supposed to have my maternity photo shoot (I only have one photo of me being pregnant from the weekend before her birth). Sunday was supposed to be my baby shower.
During the routine appointment Doctor discovered some abnormalities with my baby’s heartbeat. He sent me to the hospital down the road. I waddled there crying while calling my husband in panic. After an hour of observation I was admitted to a room and after another hour or so a team of doctors came to talk to me about what it would be like to have a baby that day. I wasn’t impressed by the possibility of having my daughter at 29 weeks and 2.5 months ahead of schedule, so I mostly ignored what they were saying.
After a steroid shot to help baby’s lungs develop, magnesium for her brain, emergency ultrasound, IV line and a few papers signed everyone calmed down a little bit and we were left alone for two hours. Then suddenly there was a dozen of doctors and nurses in my room and I was whisked away to the operating room. I saw my husband running after me and heard him yelling that I had no allergies as they didn’t know my history and then I saw him disappear around the corner (it still bothers me that I didn’t get a chance to say bye to him), I had oxygen mask over my face and was shaking violently from shear panic. Doctors were deciding if they had to knock me out fully and operate immediately or if they had time to do local anesthesia so that Alan could be present. As it turned out there was no time and before I knew I was unconscious. Last thing I remember is that they didn’t have time to wipe my belly with antiseptic, so they simply poured a bucked of it over me. Then I was being woken up by someone saying that I had a baby girl. How could I have had a baby was my first thought? I didn’t even remember being pregnant.
My husband later told me that they took me away at 2.54. At 2.57 doctors came out of the OR and started scrubbing in. At 3.01 someone poked their head out and told Alan that it was done. It took seven minutes. He told me he cried. Many weeks later as I was reading discharge papers for my baby I found out that she didn’t breathe and it took doctors six minutes before she was able to do it on her own (with help from machines). I am thankful that no-one told us that right away. I cried when I found out.
First week after the birth of our daughter we were in shock and survived mostly on adrenaline. Second week we were establishing routine. Third week was when the reality of the situation hit me. That’s when I realized that I was coming home every day no longer pregnant but without my baby. I couldn’t hold her when I wanted. I couldn’t breastfeed her. I couldn’t see her face. In fact, the first time I saw her beautiful face without and tubes and tapes and wires was three weeks after she was born. It was only a few minutes and then the nurse inserted the feeding tube, secured it with tape and put on the breathing mask again. I sat on the chair by her incubator and cried.
I cried a lot over the weeks spent in NICU. At first I cried every time alarms went off in our room, that was before I learned to differentiate between bad alarms and not so bad alarms. I cried every time I saw how tiny she was. I cried every time I saw a healthy term newborn leaving the hospital in their bucket car seat, longing for the experience that I didn’t get to have. There were happy tears too, for every ten grams that she gained, every feed that she didn’t spit up. I cried when she was out of her isolette and wore her first clothes. I cried the first time she breastfed. I cried when she finally went home.
Both Alan and I were tired. No, exhausted. He went back to work a week after she was born and had to deal with the guilt of not being by her side. He came to the hospital with me every morning just to say hi to her and then every evening after work to help change the diapers and sit with her. I spent 10-12 hour days at the hospital, surrounded by constant beeping machines, grief and fear, separated from my baby by a pane of plastic.
Days no longer followed familiar pattern of morning, afternoon, evening and night. Instead they were split into 2-4 hour chunks punctuated by pumping sessions. At the hospital I was on my own, but at home pumping was a team affair. In the beginning when I was still hurting from the c-section Alan gently woke me up a few times a night and helped me sit up. He talked to me and timed the pumping for the allotted 15-20 minutes while I sat there with tears running down my cheeks. Later, when my belly, soul, and breasts stopped hurting, he still sat with me and then went downstairs to pour my breast milk into containers and wash the bottles. Even though she was fed through a tube, she at least could have my milk. Pumping was one of the few things I could do for my baby. Breast milk was the only tangible care I could provide.
After one month we were transferred to a different hospital. She was no longer considered critical and required less supervision. She needed to learn to feed and to grow. This change, although a big step towards going home, was hard on me. New NICU was different – communal space, less privacy, loud. Care was exceptional but less strict. There was no familiar military precision routine. I could pick my baby up and put her down when I wanted to. Nurses weren’t there checking on her every few minutes. It should have been easier, but the sudden change in routine after I only got adjusted to the new normal didn’t go too well. Baby blues that I thought were under control came back and I cried again and again from feeling helpless. True, I could pick up my baby from her cot and put her down but I didn’t know how and was afraid to hold her. I felt scared changing her clothes and breaking her tiny little body. I felt isolated with my fears in this communal space seeing how other moms were doing all those things so much better than me.
Gradually I pulled myself together. I found new routine. I met new people. I became friends with other moms. We talked in the pump room, compared notes and were really happy for those moms that were leaving the hospital soon. And then suddenly it was my turn. After 52 days at the hospital we were discharged and sent home.
I was lucky. Lana was lucky. She had no complications. She took a bit longer to start breathing without any help. She took her sweet time learning to breastfeed, but after all those big milestones she didn’t need any medical help. She went home at 36 weeks and 4 days of her gestation age. Three days before officially being considered term.
I was lucky that I had my doctor’s appointment when I did.
I was lucky the hospital was near by.
I was lucky. I keep repeating it to myself over and over every time we see one of many doctors and specialists that follow her, every time she cries and I feel frustrated.
Now, after being home for many weeks, after passing her official due date, I can’t imagine what it would have been like not to see her tiny little body, not to meet her when I did, not to see her grow and develop.
The NICU experience broke me, changed me, rebuilt me.
I stopped crying since I went home.
More info:
Pictures are from Pinterest. Most didn’t have links, but I think they are from Preemie Support and Awareness site.
Canadian Premature Awareness Foundation
Breastmilk is one of the most important things you could give your preemie. Lots of moms obsess about it in NICUs. I was definitely obsessed: Importance of breastmilk for preemies
Absolutely beautiful story that I read two, three, five, ten times. It brings tears to my eyes every time: What Parents of Premature Babies Know for Sure
NICU nurses – Angels in scrubs
Video about NICU in the second hospital where we spent 3 weeks. These familiar faces brought back memories and tears: St. Michael’s NICU staff
A good resource on How to Take Care of Your Pint-Sized Preemie (The Ultimate Guide)
And just for fun, because no matter how difficult the time at NICU is, you still need to laugh and hope and dream of future, Chris Pratt also had a preemie baby
Jacqueline says
Hi Julia,
Your story is beautiful! I wish I could have read it when it came out. I have been a Nicu nurse for 23 years and I love babies. Reading stories about Nicu parents only makes me grow stronger as a Nicu nurse. I always explain to my parents the patho of what is going on with their babies and I know a lot of nurses don’t. I tell them the reason WHY we want moms to get, even that teeny tiny drop, of colostrum. I feel like I get overprotected and want my co-workers to do the same and it frustrates me. I need to come up with a brochure or something to give parents.
Sara says
Julia thank you for sharing! I had my baby girl in June and she was only 29 weeks too. I went in for a routine check and things got really scary really quickly. We are on week 5 in the NICU and I have finally stopped crying. She is so strong and growing so fast. I am hoping she will be off of CPAP soon and I can try to nurse her. Pumping exclusively and around the clock has been so challenging. Reading stories like yours gives me hope that there is a light at the end of the tunnel.
Sara
Julia says
Congratulations on the birth of your daughter!!! It’s been 2 years since my experience (my daughter actually turns 2 tomorrow) and it’s still fresh in my mind. I don’t think it’ll ever come away. And tears come back every time I think back to those weeks… keep on pumping! You are doing great! Mine was on CPAP for about the same time as yours so I’m sure the next step is near for you also. She’ll be home with you soon! If you are in Canada then check out an official Facebook group for preemies, it has a great supportive community!
Jessica says
Julia – your story brought tears to my eyes. Thank you for sharing your story in a way that will no doubt help other families going through a similar situation. I was born premature (a little over 6 weeks) and my parents still talk about the feeding tubes, the incubator and the fact that I wasn’t even the full length of my Dad’s arm. I’m so glad you and your husband are over this hurdle and now you get to witness your daughter grow up and thrive.
annika says
Beautiful story. Thank you for sharing.
Ira says
Юленька, читала и плакала. Ты МОЛОДЕЦ! Вы все втроем молодцы!
Искренне желаю, чтобы все самое страшное было уже позади. Наслаждайся каждой минутой. Как-бы тривиально это не звучало, но они так быстро растут….
Несколько лет назад в новостях я увидела сюжет, кототрый тут-же (практически:)) мне пришлось подождать несколько часов пока в Израиле наступит раннее утро, чтобы позвонить ей) рассказала ей (она родила своего сына так-же, как ты Лану), а сейчас расскажу тебе. Показывали молодую женщину врача, которая работает в NICU. Эта женщина родилась недоношеной, и решила стать врачом, и помогать недоношеным детям и их родителям.
Ира (irush30)
Gloria Duggan says
Well now I am crying. What an ordeal for everyone involved. Isn’t it amazing how you find the courage and the strength to handle these very difficult times. So happy that everything eventually (although it must have seemed like a decade) and she is a happy, healthy growing baby. Cherish the times (all of them) because they grow TOO quick!!
Lily {GastroSenses} says
Aww Julia! What a journey and I’m so happy it has happy ending! You are so brave! My little sister was born prematurely and was almost as tiny but ended up growing up into a beautiful girl who is taller than me! And we have 10 years difference! And I remember one of the nurses said to my mom "Да чего вы ревете, мамочка! Выростет еще такая деваха!":))) We spent a few days in NICU as well, because my son had difficulties with breathing (born with umbilical cord wrapped around his neck and air pockets in lungs, as well as blood sugar issues). And I was completely devastated when they took him away from me immediately. I also was able to hold him only hours later. The first breastfeeding is magical I agree. Time flies, mamas heal, babies grow. Cheers to our wonderful husbands for being by our side, we couldn’t have done it without them!
Nicoletta De Angelis Nardelli says
Julia, your story is beautiful, heartbreaking, full of courage, love and strength. You, your husband and your daughter are brave and I’m so happy the story has a happy ending. The picture you showed of your baby girl at the Fbc conference was adorable, made me smile and warmed my heart. You were also brave to write about it, I’ve been wanting to do the same for mothers that lost their babies in miscarriages, but the pain is still strong (even after 5 years), my hands shake, and I just can’t. I lost my first one at 10 weeks and after 6 months, the second one at 7 weeks. And that was the end of it. So sorry you had to go through all that, but as you said "…it broke me, changed me, rebuilt me". A big hug to you and give a little kiss to your daughter from me. Nicoletta (Sugarlovespices)
Diane says
Julia, I commend you for sharing your story – and have no doubt that any mom in the same boat will take some comfort from reading it. Such a journey! I missed seeing Lana at FBC2016 but enjoy your social media sharing. So poetic – you were broken, changed and rebuilt. And if there are cracks – as Leonard Cohen says – "that’s where the light gets in". Like all of your fans, I wish your family the best, but remember that once you have kids you have signed up for a lifetime of ups and downs. But it’s love, love, love and more love. Hugs, Diane (Kitchen Bliss)