My son was born at 33 weeks. The cause of my pre-term delivery was unknown. He was in the NICU for 17 days. He was readmitted only two days after coming home because he was unable to maintain his body temperature. He did great in the NICU, but we had many subsequent challenges after going home.
We struggled greatly with feeding. He had difficulty transferring milk from the breast due to a weak suck. He was only ever able to nurse with the use the nipple shield, and even then was not getting enough to gain enough weight. We supplemented with fortified breastmilk, (breastmilk mixed with formula to increase the total number of calories). Over time his preference for the bottle grew and he would get frustrated at the breast. It got to the point that he would kick, scream, and claw at me if I tried to bring him to the breast. It was very emotional and stressful, but eventually I realized that I had to make the obvious choice and feed him however he was best able to get the nutrition he needed. I continued pumping so that he got breastmilk for his entire first year.
We had other challenges during that time as well. He had a tongue tie which was revised, but the revision made no significant difference on his feeding. He developed an oral aversion and began refusing the bottle. He would only drink enough to take the edge off of his hunger and would then refuse. So his weight gain began to slow, and at one point he actually began to lose weight.
At nine months he was admitted to the hospital for “failure to thrive.” He was not on the growth curve at all, and was showing some signs of delays. We did batteries of tests, and everything was essentially anatomically normal. He had reflux, which may have been the underlying cause of his oral aversion, but we will never know for certain. But he had developed a behavioral pattern that was putting his growth and development in jeopardy by refusing to eat. We came home with an ng tube. I learned how to use it at home. I learned how to replace it if he pulled it loose. We did many months of occupational therapy and began physical therapy. It felt like it took over much of my life, being his home health nurse, care coordinator, advocate, and all the while trying to just love and enjoy him and be his mama.
One of the things I remember the most vividly was the intense sadness that I experienced the first nights in the hospital after giving birth. The early birth of my son came as a complete surprise. My water broke and only a short number of hours later my son was born. The transition of going from being pregnant and having your baby physically with you at all times, to being not pregnant and trying to go to sleep the first night with your baby away from you down the hall, was a terribly empty and strange feeling. Everything around me seemed like a reminder that this was not how it is supposed to be. Walking through the halls of the labor and delivery ward, and peeking into the empty rooms with doors ajar, seeing the newborn crib in the room, where mothers and babies get to be together… and hearing cries of newborns from the occupied rooms, where babies were in their mothers’ arms, made me feel the sadness of what was going on.
People’s kind words of congratulations felt very strange to me. While on the one hand, there was a new life to celebrate, I was also grieving and dealing with many intense and complex emotions. I was having to let go of all the things that didn’t happen as I had hoped. (The birth experience I had planned for, the opportunity to take beautiful pregnancy photos before delivering, and most importantly, the comfort and security of giving birth to a full-term healthy baby). While I appreciated the outpouring of love in the form of “congratulations,” it made me feel more alone and isolated given that people really didn’t understand the complexity of what I was going through.
The NICU staff were amazing. Not only did they provide loving, nurturing care to my son, but they were very supportive of me as a new mother, completely shell shocked. After the two days that I remained in the hospital as a patient, I did experience a sudden shift. After two days of being checked on and monitored around the clock, I was discharged, and then it became very clear that I was no longer the patient. My son remained in the hospital, but I now had the added challenge of taking care of my own needs. It meant trips to the hospital cafeteria, or bringing food from home, and while still dealing with recovering physically from the birth. In many ways, the NICU nurses were main source of advice and support that I had. For instance, I experienced problems with severe engorgement, and it was one of the NICU nurses who came to my aid and provided me with some guidance on how to minimize the pain and swelling.
One of the hardest moments was going home for the first time without the baby. But after I adjusted to the new “normal,” I grew to enjoy our quiet house as the place where I could rest and take care of myself in between trips to the hospital. As much as I dreaded going home without the baby in my arms, it was a blissful relief to experience the comfort of home and get away from the bright hospital lights, the cold bathroom floors, and the lack of independence and flexibility that the hospital stay brings. I did my best not to feel guilty about enjoying those quiet moments, and reminded myself that getting all the rest I could would help prepare me for the baby coming home.
We visited the hospital twice each day. My life was ruled by a rigorous pumping schedule, and everything needed to be coordinated around that. I cherished the time I got to spend with the baby in my arms. I appreciated the company of having my mom or husband come with me and just sit with me at the bedside. What felt at the beginning like an unbearable eternity, turned into a routine. You see other parents come and go. You watch them bring in their car seats and sit with quiet envy as they celebrate their discharge on homecoming day. And you see other families day after day with tiny babies far sicker than yours, and feel silently grateful that your little fighter is becoming so healthy and strong.
And then finally one day we went home. With a thousand unanswered questions. Like why did he come early? Was it something I could have prevented? How will his development be affected? The answers to some of these questions will be revealed over time, and many of them are things we’ll never know.
But with each passing day, our love for him grows and the emotional wounds heal. And I’ve learned so much, like:
1) Take care of yourself – There is something that felt selfish or inappropriate about taking care of myself while my son was in the NICU. When you think about becoming a new parent, you expect to be awakened all night, and tending to your newborn around the clock. While my baby was in the NICU, I was not the one primarily responsible for his day to day needs. It was challenging to overcome a sense of guilt about going home, getting rest, or not spending every moment at his bedside. But the reality is that he was getting exactly what he needed. That is where he needed to be, and he was getting excellent care around the clock. Those moments I spent with him were the most wonderful moments of each day, but taking care of myself was an important part of being able to be there for my child. I would encourage other parents to know that there is no right or wrong amount of time to stay at the hospital with their child in the NICU. It is important to take care of yourself physically and emotionally, and that is part of taking care of your child.
2) You are a parent. My preemie was my first child. And going from being pregnant, to suddenly not pregnant, yet not having my baby with me, raised feelings for me about my identity as a mother. I went into the bank one day and the banker asked me if I was expecting (seeing my post-partum figure, but no child). When the NICU staff told us our baby was ready to wear clothes my husband and I rushed off to Target to buy his first sets of pajamas. At the register, the sales clerk asked me if I needed a gift receipt. As I cried and cried in the parking lot, I explained to my husband that I don’t feel like a mother. The sales women assumed the baby clothes were a gift, because I was in the store without a baby. Even though I knew in my mind that I was my child’s mother, my heart felt so lost and confused. What I would tell other NICU mothers, especially first time mothers, is that what makes you a mother is not being the one to be there each minute of the day, or even to feed and bathe your child. You are the baby’s mother, and even if the world doesn’t easily recognize the cues that make it apparent, your journey as a mother has begun.
3) Let people know what you need – I actually felt very lonely and isolated after my son was born. All of a sudden I was away from work, which was normally a big source of friendship, support, and socializing. And everyone seemed to hold off and allow the new family time to adjust and be with their new baby. In most cases, that may be a welcome period of rest and intimate family time, but for me it just made me feel more isolated. Because I didn’t have my baby with me, I craved social contact. Perhaps people didn’t know what to say, or thought I needed space or time. I wished I had done a better job of telling people what I needed and wanted. I wanted friends to visit me. I wanted a chance to talk and to celebrate and grieve all at the same time. I felt that if people weren’t able to see the baby, they wouldn’t necessarily want to come visit. But the friends who did, who came by and just sat with me and talked and listened, gave me something that I really needed. So what I would share with other families is that if people back off, it is likely because they don’t know what you need or how to support you. But if you are able to communicate your needs, you will find a world of loving support there eager to help you in whatever ways they can.
I often reflect on how complicated our medical journey was and think about all the dozens if not hundreds of phone calls I made to schedule appointments, get referrals, negotiate with insurance, correct errors, request records. I feel very fortunate that I am able to do all these things in order to advocate for my son. I have access to a computer, phone, and fax. I have worked in a medical setting. I have a flexible job that has enabled me to make or receive phone calls, or take time off work as needed. And in spite of all these things, the experience has been very challenging. There are questions I wished I had known to ask sooner. There are things that in hindsight I wish I may have done differently. Even though our medical care has been excellent, there is a lot of responsibility on the parent to be their child’s advocate. And if my experience can enable me to support or help other families as a Graham’s Foundation preemie parent mentor, I feel privileged to do so.