Guest Post Friday! “A Few Things I Learned in the NICU”

Guest Post Friday! “A Few Things I Learned in the NICU”

I’ve always liked to write detailed lists. Whether it’s just a to-do list to make my day run more smoothly, or a more significant list, I like order in my life. That’s probably part of the reason why I got a degree in Elementary Education. Teachers are forever making lists and lesson plans, which are really just glorified lists.

I always had this perfect plan to have four beautiful children, spaced two years apart. I grew up in a family of three kids; someone always had to ride alone at Disneyland. So, voila! Four kids it would be. Such a scientific and rational approach to the way I decided how many babies I wanted. And of course I would be done having babies by the time I turned 30.

I was so excited when my husband and I started trying for a baby. Excitement gave way to nerves, which gave way to sadness, and eventually depression as the months turned into years. I watched as my closest friends and family had first one baby, then two, and three. I shared my struggle with some of them, but no one but my husband really knew the extent of my grief as I soaked my pillow with tears each night.

My husband and I are fortunate to live near one of the leading infertility research centers in the world. We spent years and tens of thousands of dollars on invasive testing and procedures. We watched as our friends built their dream homes while we stayed in our tiny town home. We listened and inwardly cringed as they would sort-of jokingly say, “Just save some money, you can move, too.” All of our money went to infertility treatments – several down payments worth.

In the summer of 2008, we finally got the news that IVF worked. We were finally expecting a baby! My pregnancy progressed, and at about six weeks, so did my morning sickness. I spent a good chunk of each day with my head in the toilet. What time wasn’t spent vomiting was spent in IV Therapy at the hospital trying to replenish lost electrolytes. But I was the happiest sick pregnant girl you’ve ever seen. I was so happy to be sick since it meant I had a tiny life growing inside me. I’ve heard of those women whose morning sickness subsides with the passing of the first trimester, but mine only seemed to get worse. Maternal Fetal Medicine followed my pregnancy closely, and thankfully, our baby girl seemed to be thriving despite my living in the bathroom.

Late in my 36th week, I thought I was just more dehydrated than normal when I woke up with a pounding headache and blotchy vision. A call to my doctor and the nurse told me to go straight to Labor and Delivery. I thought she was overreacting; I wasn’t even having Braxton-Hicks yet. But I did as I was told, although I didn’t take my go bag with me. Surely they’d just give me a bolus of fluid and send me on my way.

My blood pressure was 210/170. I had developed severe preeclampsia and would not be leaving the hospital without becoming a Mommy first. My doctor ordered an IV of Magnesium Sulfate to lower my blood pressure and protect me and the baby from stroke. It did its job, but not without making me violently ill. I longed for the days of just plain old morning sickness (If you’ve been on mag, you have my sincerest sympathies. That stuff is awful. There really should be a survivors support group or something). With my blood pressure in a safe range, Pitocin was added to the drugs being dripped into my veins. At least I would be able to have a vaginal delivery.

I labored for 30 very long hours. At 3:04 am on March 5, 2009, two weeks after my 29th birthday, I gave birth to our sweet Baby Kate. She weighed in at 5 pounds 8 ounces and 18 inches long. I got a brief glimpse of her before she was whisked away to the NICU, a place I knew nothing about.

Born at 37 weeks 1 day, Kate was technically full term. Since she was an IVF baby, there was no question about her due date. I always thought the NICU was a place for teeny tiny preemies, not a baby only three weeks early. Kate’s lungs were underdeveloped and she was surfactant deficient. The mag, while protecting both she and I from stroke and seizure, had left her completely sluggish, only making her breathing problems worse. When she was a couple of days old a fever tipped the doctors off that there was something else wrong. A slew of tests showed she was septic.

Kate figured out how to breathe on her own, the mag wore off, the antibiotics worked and she recovered from sepsis. With those things behind her, she could focus on eating. We took her home two weeks after her birthday breathing room air, an apnea monitor our only equipment we would keep for six months. Five years later she is healthy and happy and so excited to start Kindergarten in the fall.

When Kate turned three we decided it was time to try for another baby. “Try for another baby” meant making an appointment for another IVF consult. We did another fresh IVF cycle (we weren’t able to freeze any embryos with Kate’s cycle) and found out early in September of 2012 that it was successful. Not only was it successful, we were expecting twins! We were excited but incredibly nervous. I couldn’t stop thinking about all those twins I saw in the NICU, much smaller and sicker than my own baby. I tried to push those thoughts to the back of my mind and was enjoying a pregnancy with much less morning sickness. Who would have guessed that two babies meant I wouldn’t be as sick?

I was getting ready to take Kate to her preschool fieldtrip at the Pumpkin Patch when I felt a gush of fluid and ran to the bathroom. Hoping I had just peed my pants, I started crying when I found bright red blood. I called my doctor and was told to head to the ultrasound department. The ultrasound showed a subchorionic hemorrhage on Baby A; the placenta was lifting from the uterine wall. Both babies looked fine and had strong heartbeats, but we didn’t know what would happen with the placenta on Baby A. Sometimes they will reattach (I had a very small one early in my pregnancy with Kate that reattached after only a few days), but this hemorrhage was much larger. I was sent home on strict bed rest knowing that Baby B was fine, but anything could happen with Baby A.

I was the laziest girl around. The bleeding came and went. I wanted Baby A to have every opportunity to thrive. A week later I went in for another ultrasound and knew immediately something was wrong when the tech turned the screen so my husband and I couldn’t see it. He called the radiologist, and said, “Can you confirm the demise of Baby B so I can tell the patient?” I immediately thought he got it wrong. Baby A had the bleed, Baby B was fine. He turned the screen and said, “I’m so sorry. Baby B no longer has a heartbeat. It looks like there was a brain abnormality.” I looked at the screen and saw that indeed Baby B’s head was much larger than Baby A’s. Although we don’t know for sure, the doctors think that baby developed hydrocephaly.

I looked again at the screen and could still see the hemorrhage on Baby A, along with the strong heartbeat and kicks and flips I couldn’t feel yet. The tech was the same one that did my ultrasound the week before, and he sensed my question before I asked it. “The hemorrhage is still measuring the same size, Emily. At least it hasn’t gotten bigger.” Again I was told to go home, rest, and wait. We scheduled a follow-up ultrasound for the next week.

I tried to keep myself busy with books, Netflix, naps, reading to Kate, but my mind would eventually drift to the fate of Baby A. The day of the ultrasound finally came and to our surprise, the hemorrhage was gone and the baby looked great! I cried tears of gratitude and relief. I didn’t have to be on bed rest, but was told to take it easy. We grieved the loss of the twin, but were so grateful to have one healthy baby.

Fast forward a few months and my pregnancy was progressing beautifully. What little morning sickness I had stayed well controlled with Zofran and I didn’t feel too tired. Maternal Fetal Medicine followed my pregnancy again because of the large hemorrhage in the first trimester. At 26 weeks I was in for a routine appointment and ultrasound when the doctor told me my cervix was starting to shorten. It was only 1 cm short and my FFN test was negative (used to predict preterm delivery), but he decided to give me a steroid shot anyway just to be on the safe side. I returned to his office the next day for the follow-up shot.

The very next day, at 27 weeks and 1 day, I was sitting at lunch with my parents and daughter when my world got tipped upside down and full-blown labor hit. My mom rushed me to the hospital and called my husband. I watched in horror as the contraction monitor showed hard steady contractions closer and closer together. My doctor came and started me on a whole bunch of medications to try to slow labor. I sobbed when she said she was going to give me mag to help slow the labor and protect my extremely tiny baby’s brain from bleeding. We were told that the first 72 hours were the most critical. If I could get through 3 days still pregnant, there was a possibility I could carry for another two weeks.

I was extremely lucky. I was a hostage in the antepartum unit for seven long weeks, but each day my baby boy stayed inside was three less days he would have to stay in the NICU. At 32 weeks 1 day I felt a gush of fluid and was devastated to discover that my water had broken. All attempts to stop my labor were discontinued. This baby was coming. The doctors told me he was still better off inside, even with ruptured membranes, until 34 weeks. If he didn’t come on his own in the next 13 days, I would be induced. I was closely monitored for infection. Any sign of infection or fetal distress and they would take him.

Everyone was surprised when I did indeed make it to 34 weeks. James was born at 2:08 pm on April 18, 2013 weighing in at 4 pounds 6 ounces and 17 inches long. James wasn’t breathing and the two minutes it took to resuscitate him were the longest of my life. He took a big gasp, and started breathing on his own. I was shocked when the doctor told me I could hold him for a minute before they took him to the NICU. I had spent seven weeks mentally preparing myself to not be able to hold him after his birth.

This time when we entered the NICU, familiar faces greeted us and we didn’t feel like we were in such a foreign place. But that doesn’t mean it was easy, far from it.

The NICU was still under winter visiting policy since there was still some RSV going through our community. This meant our four-year-old daughter only got to see her brother through a window for the first three weeks of his life. The policy was lifted on Mother’s Day and siblings over the age of two who had current vaccinations were allowed to visit. My heart nearly burst as I watched my children meet each other for the first time. The NICU will always be the place where we were a family all together for the first time. It’s the place our family began.

James was considered a feeder-grower. He just needed time to get a little bigger and learn how to eat. He was breathing room air for the first two weeks until he contracted Corona Virus. He was put on oxygen and moved into isolation so he wouldn’t get the other babies sick. We were able to take James home on oxygen and an apnea monitor when he was one month old.

Fifteen months later and James is a happy, healthy little boy. He does have delays and he is in Speech and Physical Therapies. But he’ll catch up in his own time.

So what have I learned, 5 years and lots of gray hair later?

  1. Don’t be afraid to ask questions.
    I remember watching Kate’s tiny body shake as the oscillator breathed for her and I would hear other parents and doctors talk about this magical thing called “Room Air.” I had no idea what that was. I finally asked and was told it’s the air in the room. It means breathing without oxygen support. Alrighty then. Clearly I lost some brain cells whilst on the mag. There is a definite education to be had in the NICU, one that is not privy to parents in the Well Baby nursery. Take advantage of it. The staff is happy to answer questions.
  2. Want to get your baby home faster? Leave them be.
    This is the hardest thing. Whether your baby was born too soon or was right on time but has special medical needs, she needs time to sleep undistributed. Growth hormones are only secreted during deep REM sleep. So try not to hate the nurse when she tells you to leave your baby alone. Your baby really does need to rest without being bothered. But do ask when you can hold her. Kangaroo Care has been shown to shorten a baby’s hospital stay 7-10 days. The doctors and nurses want you to hold your baby, as soon as she’s stable enough.
  3. Get to know the other parents and staff.
    Whether your NICU stay is a surprise like it was my first time around, or you had months to think about it, it’s not anyone’s top choice of places to be. That being said, I wouldn’t trade my NICU experiences for anything. Not only did they help shape my children into the wonderful kids they are today, they shaped me, too. My closest friends are comprised of people I met in a place I never wanted to be.
  4. It’s ok to hate pumping.
    I’m pretty sure my own personal hell would include a big IV of mag and me chained to a breast pump. Don’t get me wrong, I know how important breast milk is, especially to sick and preterm babies, but that doesn’t mean I enjoyed the pumping process. Human bodies aren’t stupid. They know the difference between a pump and a baby. Don’t freak out if you don’t get very much milk, especially at first. Take advantage of the lactation nurses in the NICU, but don’t make yourself crazy. One of the lactation nurses recommended I get a pumping bra after I had James. I had no idea what this was, but I went looking for one anyway. Let me tell you, it is worth its weight in gold! It holds the pump in place so you can use your hands to hold a book, surf Facebook, or just doze off for a while. It made me hate pumping a whole lot less. And if after all your best efforts you still can’t produce enough milk for your little one, it’s ok. You’re not any less of a mother.
  5. Take time for yourself AWAY from the hospital.
    I rarely left Kate’s bedside while she was in the NICU. Only for a quick meal and shower, and I was back to sit and watch her sleep pretty much around the clock. In hindsight, this didn’t serve me or her well. At all. Once I got her home I was so tired I couldn’t see straight, let alone take care of a baby. Every instinct in your postpartum body is screaming at you to stay with your baby. This is a good thing. Mostly. It prevents abandonment. But you can’t take care of a medically fragile baby without first taking care of yourself. Just like on an airplane they tell you to put the oxygen on yourself before helping small children; you’re no good to anyone if you’re passed out in the aisle. So try to find time away from the hospital even though your thoughts never really leave. Go to dinner, get a pedicure, take a nap, play with your other kids, and recharge your batteries. Take advantage of the highly qualified babysitters. I am convinced that this helps babies heal faster and helps the transition to home.
  6. Feelings of grief will overtake you at some odd times.
    I can still remember the first time I held both Kate and James together at home. I looked at my perfectly healthy children and burst into tears. And they were not tears of joy. No, these were tears of deep grief that I didn’t even know I had until that moment. Feelings of loss of a normal pregnancy and delivery wracked my body with sobs. I would never know what it felt like to hold my brand new baby skin-to-skin right after delivery. I would never know what it’s like to be discharged from the hospital with my baby. I didn’t even know what it was like to get pregnant without medical intervention. Feelings of grief quickly turned to anger towards my body. I couldn’t get pregnant or even carry a baby full term. James’ future was at risk because my body couldn’t keep him inside for six more weeks.
  7. Talk to someone.
    It’s ok to have these feelings, they are completely normal, but talk to someone about them. Every hospital has a social worker, and many NICUs have one dedicated just to them. They can help you work through it. Find support groups, talk to fellow parents. Just don’t try to deal with it alone. Parents that have babies in the NICU are highly likely to suffer from depression and even PTSD. It can be worked through, it just takes some time.
  8. People don’t know what to say to you.
    Try to forget their stupid comments and educate them in the process. Or at least laugh. Laughing is good.
  9. Keep visitors to a bare minimum after you get home.
    In the age of social media when we know what our friends had for breakfast, we certainly know when they’ve had a baby. But your baby is fragile with an underdeveloped immune system. To alleviate people from “just popping in” I posted something to the effect of, “We know you’re all so excited that we get to bring our sweet miracle home from the hospital. We are not accepting any visitors for two months due to his developing immune system. We can’t wait for you to meet him when he’s stronger and bigger! In the meantime, feel free to leave treats at the door.” This warded most of the people off without hurting feelings and we did get some yummy treats.
  10. Let people help you.
    I’ve always prided myself on being independent. Then I got put in antepartum. I had to rely on family and friends to take care of my daughter and my house. After James was born, Kate was still farmed out quite a bit for the times I had to be at the hospital with him.
  11. Try not to feel guilty.
    I remember watching parents of multiple children in the NICU when I was in there with Kate. I remember thinking that at least I didn’t have kids at home to worry about. Then came James. Whenever I was at the hospital with him, I felt guilty about not being with Kate. When I was home with her, I felt guilty about not being at the hospital. This is completely normal and completely unnecessary. Try not to beat yourself up. You’re doing the best you can. I asked Kate what she remembers about Mommy and brother being in the hospital last year and she said, “It was fun! I played with lots of friends.” Kids are resilient. Thank Heaven.
  12. Listen to your gut.
    If you have a nagging feeling that something isn’t right, speak up. Mothers often know before anyone else when something is wrong or needs to be changed.
  13. Take it a day at a time.
    The biggest lesson I learned in the NICU was patience. The days and nights are incredibly long, but they do pass. And you will live to tell the tale. You can do this. “You never know how strong you are until being strong is the only choice you have.”

Written by Emily Madsen Mecham


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