What it means to be premature

Our babies were born at 33w2d gestational age, so basically, they were seven weeks early. They spent the first four weeks of their life in the NICU. Here’s a glimpse into what that was like.

Jed and I lived in the parking lot of the hospital in a travel trailer that his best friend brought to Albuquerque for us. We live 3 hours away from the hospital where our children were born, and not having to stress about housing arrangements was a huge blessing. However, the trailer was two blocks from the hospital and after a c-section and a month of hospital bedrest, that walk was one of the longest I had ever taken. Did I mention that it was uphill from the hospital?

We would go to the NICU every morning in time for rounds. We would take a temperature, change a diaper and then feed a twin (each), then talk to the neonatalogist, pharmacist, charge nurse, nurse practioner and our children’s nurse for the day. We’d hear how they were doing, what the goals were, how much they weighed, how they were eating or breathing or pooping and then weigh in with our questions. That’s when I asked if I could breastfeed, if we could increase feeds faster, if we could try to wean them off oxygen and so on.

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In the beginning, Clara was on a high flow nasal cannula and a feeding tube. Cormac was on a bubble CPAP and also had a feeding tube. Both were under warmers, but not in isolettes to control their temperature. Both were given my colostrum in small doses through their feeding tubes. Clara quickly progressed to drinking from a bottle, but Cormac’s stomach was so irritated from all the air being pushed into his belly that he couldn’t eat for several days. He was having very labored breathing and was intibated twice to give him surfactant to help him breathe. He was still struggling, so the doctors ordered an echocardiogram and found a heart murmur. Instead of immediately giving him medication to close the murmur (which has nasty side effects including possible kidney failure), the doctors suggested waiting and letting his body try to heal itself. And several days later, it did.

Meanwhile, Clara got jaundice and got to spend some time under the bili lights. Both babies kept working on eating and breathing and getting fat enough to maintain their body temperature. I pumped around the clock, eight times a day, to make enough milk to feed my babies. The lactation consultants were super helpful, the doctors were understanding, and we were working toward a very important goal for me – breastfeeding. Eventually I was breastfeeding twice a day, with the help of nipple shields, and the babies were doing well. I held them together for the first time when I fed them both together. It was a powerful moment for me as the mother of twins. I could do this.

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Two weeks into our stay in the NICU I started getting frustrated. Both babies were stalled in their feeding. They’d happily drink 20cc from a bottle, then pass out and get the rest in their feeding tube. Every time. I wanted to pull my hair out. Then I’d see a baby go home and I’d be jealous and happy for the parents and ask, “How long we’re you here,” and sometimes the answer was, “Four months.” Here I was, bitching about two weeks. It helped put things into perspective.

One of the babies that was our neighbor for awhile was born at 29 weeks. She weighed a little over two pounds and had a major heart defect. Her mom was pumping for her, trying to get her to three pounds so that she could be airlifted to Denver for open heart surgery. Then she got a staph infection in her liver. They gave her an epidural. Her mom was inconsolable. I wanted to tell her that it would be okay, but I thought that might be a lie, so I told her that she was strong and that all she could do was try to remain hopeful and keep pumping for that tiny girl. And then I didn’t see her again. For four days. I cried, thinking that the baby girl had lost her fight, but then I saw the mom in the elevator and she told me that her daughter had pulled through. She was back on track to go to Denver.

I saw babies who were born full term, who didn’t really want to eat what the doctors said they needed to, stay in the NICU for longer than us. I saw babies whose moms didn’t want them lay in their beds, waiting to meet their foster parents. I saw moms who were on drugs and moms who were perfectly healthy all in the same situations. I saw gangster dads and white collar dads all looking into their babies’ faces with the same excitement, anxiety and hope.

Our babies caught some sort of stomach bug about three weeks after they were born and were not allowed to eat until their digestive systems recovered. Hearing Clara cry because she was hungry and couldn’t eat was heartbreaking. I avoided the NICU for a few days. I knew she wanted to be held, but I couldn’t bring myself to go as much as I had before. Three days later, she was eating. Cormac only had to wait two days. Then they both started nippling all their feeds (no more tube feeding) and a few days later, we were released. Both babies came home on low-flow oxygen, but we were so thankful to be on our couch, holding our babies at last.

I learned some important things in the NICU.
•Always bond with the nurse. Their patience with your child can be the difference between being released and not.
•Go to rounds. When the doctors see that you are informed, that you care, and that you’re not an IV drug user, they are more willing to help you meet your goals.
•Count your blessings. Yes, you might live in a parking lot and the hospital food might be intolerable (don’t ever eat the ribs), but your baby is growing and developing and is in the second-best place to do that.
•Visit your child. This might seem obvious, but so many of those babies are hugged only by nurses. They need love more than most. Hold them. Talk to them. Get skin-to-skin whenever you can.
•Learn about therapeutic touch and infant massage. We had a wonderful nurse who showed us some therapeutic touch on Cormac. He went from flinching when we touched his feet (imagine getting your heel poked twice a day for weeks) to smiling and relaxing while we massaged him.
•Early babies get two birthdays. There is the day they were born, and then their due date. For the first two years of their lives, they are allowed to be behind developmentally. And tell people that. When your baby isn’t sitting at 5 months it’s ok. They are all different to begin with and preemies get a little more leniency than most.

It has taken awhile for the twins to adjust to life without constant noise, but it’s getting better. They are breastfeeding like champs, with the occasional bottle, but we haven’t supplemented with formula at all. They were sent home on oxygen, then quickly weaned off of it. They also came home on vitamins, but we stopped that when Cormac kept throwing them up. Every day is a challenge and a new experience, but our bond is growing stronger all the time. They are learning to trust us more and we are learning what they need too.

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And what they need most of all is to be loved.

No Comments

  1. Shelby Moss -  December 16, 2011 - 9:50 am

    Love this! It sounds very similar to my experience, except it’s been over six weeks and Tripp is still in the NICU. I love how you said that talking to others helped put things in perspective. I always try to remember that whatever we are going through, someone else probably has it worse!

  2. Laura Gorby -  December 16, 2011 - 7:26 pm

    Thank you for your story Jessica. I am Laura Gorby, Lisa Mason’s mother. I am also a Nurse Educator at the Gayle Greve Hunt School of Nursing Texas Tech University Health Sciences Center in El Paso, TX. Your story is very touching. May I share your story with my students and my NICU nurse friend to illuminate the power of love in healing and most importantly, the crucial commuication and deep authentic listening that is essential for nurses to employ at times in our human science of nursing?

    • Jessica -  December 21, 2011 - 5:54 am

      Share away, Laura. 🙂

  3. Xza -  December 17, 2011 - 6:28 pm

    Such a beautiful post. I laughed(hospital ribs), I cried and I look at Atticus and realize how lucky I am to have my overdue baby in my arms.

  4. Shannon -  December 18, 2011 - 12:19 am

    Great post, glad they are doing good! They are too cute 🙂

  5. Colleen Cuenca -  January 1, 2012 - 7:53 pm

    Amazing story! My son was born at 34 weeks and 4 days. Watching his fight was the hardest thing I’ve ever been through yet it was amazing to see how strong he is. Happy that your two are doing well!

  6. Kelli -  January 4, 2012 - 10:56 am

    Gosh this gives me NICU flashbacks. There were so many parents with babies in the NICU while we were there that only visited every few days, or maybe once a week. It was SO SAD.

  7. Heidi -  January 7, 2012 - 12:27 am

    Thank you for sharing. I’m a mommy to a 33weeker who is 6.5 months now. I live 45 minutes from our nicumand would make the drive twice a day, I would always feel bad for the babies that I never saw there parents come. One little girl was there for 10 months and I thought my 21 days felt like a life time. Listening to other NICU parents helped while we were there

  8. Laticia -  August 11, 2012 - 10:15 am

    What a great story. Carter was a 31 weeker and I too had to remind myself that it could have been much worse. He was a feeder and grower with a case of jaundice. We were there for 36 days, but he is incredible and strong and didn’t have any other problems. I was very blessed. Now he’s an 11 month old exclusively BF chunk who is learning to scoot. 🙂 love this post.

  9. Erin -  August 11, 2012 - 1:27 pm

    Thanks for writing this! I cried reading this and remembering how I thought our 12 day NICU stay was torture. Lane was born at 36w4d when my pre-eclampsia got too bad to stay pregnant. He had to stay to treat possible pneumonia and work on breathing and feeding. I stayed in a sleep room at the hospital the first week, feeding and pumping around the clock. I will never forget leaving the hospital without him the first night I had to go home. I cried the entire 40 minute drive and most of the night until I got to go back the next morning. I am incredibly grateful every day for our healthy and happy baby boy! it was hard having him in the NICU but he’s perfect and I wouldn’t trade him for the world!

  10. Jamie -  January 21, 2013 - 4:28 pm

    This takes me back to our days in the NICU. We first had a 10 day stay followed by a week home and another 5 day stay. The tips you gave we so true for us too. I look back at that time and am so thankful that everything turned out well for us. I loved the part about the parents from all diffrent situation but all look at thier baby the same way. Congrats on your beautiful babies

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