Rough Start with a Happy Ending

My pregnancy was fairly uneventful. There were a few bumps in the road, but nothing compared to what was going to unravel at delivery and birth. During our hospital tour, they took us up to the NICU. I never imagined we would be there in just a few short months.

I was scheduled to be induced. I should have known everything wasn’t going to go according to my “plan” because when we got to the hospital, they had no idea we were coming. Fortunately, my nurse was wonderful and we were able to get everything squared away quickly. When the doctor came in and broke my water, she announced that there was meconium in it, but “not to worry.” That was easier said than done because I worry about everything. My labor progressed quicker than we imagined and after about 5 hours, it was time to push. I could see a sense of worry come over my nurse’s face every time I had a contraction, as baby’s heart rate would drop. The doctor came in, examined the situation, and told me that baby’s cord was wrapped around his neck, not tight, but wrapped nonetheless. She said that I had 30 minutes to push, and if he wasn’t out, I would need an emergency c-section. 27 minutes later, our 7 pounds 15 ounces beautiful baby boy made his entrance into the world. He was not breathing. I panicked and asked why he wasn’t crying. They immediately began working on him and called the NICU physician assistant STAT. I was trying to see what was going on, but couldn’t see much. Shortly after that, they whisked him away to the NICU. I demanded my husband go and stay with him and that I would be fine. I had to be monitored for 3 hours in my room, and up to this point, it was the longest 3 hours of my life. I wanted an update on him, so I sent my husband a text message and he messaged me back: “Promise you won’t get upset.” I immediately knew something was up. He then said that he had to be intubated because he wasn’t breathing well on his own, but he was doing okay. When I finally was able to go up to the NICU to see him, a whole flood of emotions came over me. How was this happening? What could I have done differently? Why after waiting so long to get pregnant (we went through infertility) was this happening? The next few days were awful, at best. He had to be on a cooling blanket because of his cord being wrapped. He went through every type of ventilator the hospital had because he would do well on one, then his oxygen numbers would tank and they would switch. He had to be manually bagged more times than I care to remember. They suspected he had a seizure (although to this day I am not fully convinced of this). His labs were horrible. His lungs were cloudy. More medical terms/words than I have ever heard were being said to me, but all I heard was his heart and lungs were not working the way they were supposed to.

Later, I learned the official diagnosis: Meconium Aspiration Syndrome causing Persistent Pulmonary Hypertension in Newborns (PPHN). On one occasion, a doctor said to me that he was “cautiously optimistic.” My heart sank into my stomach and a lump went into my throat when he said that.

That wasn’t good enough for me.

To me, that meant that there was a chance that we weren’t going to be bringing him home.

The only thing that kept me sane during those days (because our family couldn’t be there because of COVID restrictions) was my husband, phone calls with my mom, and our WONDERFUL nurse, Ashley. She would sit next to me on the couch in his room and let me talk through my emotions. She told us on a Thursday evening that she had the next few days off but she would see us the next week. I was instantly nervous because I had grown so comfortable with her. On Friday, I walked into his room and I just had a feeling that the day was going to not be good. He was scheduled to have a procedure done and he hadn’t had his pain medication he needed so he would stay calm (as he didn’t like being touched). When I finally found his nurses to ask (they weren’t right there, something I was accustomed to with Ashley), they said that they were going to give it right then. As the day went on, things only got worse. His oxygen was dropping into the low 90’s, then 80’s. Nobody seemed concerned, except for my husband and me. Then it was in the 70’s. I asked the nurses to do something and they checked him over then said that they had already done everything they could do. I asked for the doctor. By this time, his oxygen was in the 60’s (while on the ventilator) and he went limp. The room filled with the doctor, nurse practitioner, nurses, respiratory therapists, etc. Not one person came to tell us what was going on or what the professionals working on him were doing (even though there were several others standing around.)

In the 12 years I have been with my husband, I have seen him cry once. He was scared and crying. I was rocking back and forth in a stationary chair. I was numb. We were praying to God not to take him, to keep him with us no matter what. They began to manually bag him. The doctor approached us and said that it was time he be transferred to University of Iowa Hospitals and Clinics (UIHC), as they have the only level 4 NICU in the area. In a sense, I was relieved to hear this. He then said that they were going to give him a paralytic to see if that would help. When they did, his oxygen started to come back up as his little body wasn’t working so hard against the machine. They called for the ambulance and soon thereafter, it arrived.

Seeing my baby being loaded into the incubator cot on the stretcher knocked the wind out of me. I wanted to ride with, but there wasn’t room for me because a neonatologist, 2 nurses, a respiratory therapist, and 3 paramedics were all in the rig. My husband and I loaded up into our car and watched as he was loaded into the ambulance. While I have pulled over for many ambulances in my time, nothing prepared me for the feeling I had when we had to pull over for this particular ambulance, with its lights and sirens on, knowing it was my son in the back. It was indescribable and a feeling I never want to experience again. When we arrived at UIHC and made it through all the COVID checkpoints, I was petrified to find out whether or not he made it on the ride over. We couldn’t see him right away, but were assured he did well on the ride and they were already making changes to his medications.

A social worker sat with us and asked us what our expectations were. It was simple - we wanted to be involved in his care. When we finally saw him, I was relieved, but still scared. The next few days he was critical and put on stress precautions, but I never once saw a doctor or nurse get excited or nervous about anything with him.

They all had a calm demeanor and always assured me that things were okay. They always made sure we were involved in his care, just as we asked. We got to be there for his daily care meetings, and they always took the time to explain things in a way we could understand. Emotionally these days were extremely hard and I cried more tears than I have ever cried. I even sobbed in a hospital shower. It’s the little things (such as putting lotion on his legs and changing his diaper) that got me through it. One day, we came back from lunch and his nurse had music playing in his room. For the first time since he was born he looked peaceful and therefore, I felt I could finally breathe.

After almost two weeks, we were finally able to hold him as he central line was removed. I thought that everything was going to be perfect. While it was great to finally be able to do this, I was scared the entire time, taking away from this precious moment with my baby. What if I knock one of his wires? What if I mess something up? What if I hurt him? It definitely is not what I imagined holding my baby for the first time would be. As time went on, he was becoming more and more stable and I was becoming more and more comfortable. I tried to nurse and pump, but because of my stress and anxiety, I didn’t produce enough milk for him. Just another thing I felt robbed of.

As time went on, we were able to be moved to a less critical bay, then finally moved to the children’s hospital, where we stayed for approximately 12 days so he could wean off of medications. Then, we got surprised and were able to go home a couple days early. I was so ready to get him home and start our lives as a family of 3.

What I was not ready for was the postpartum anxiety (which I didn’t even know was a thing prior to this) and PTSD I would face for the next several months (and truthfully, to this day).

While I never imagined we would be in the NICU, there were many valuable lessons and experiences we gained, such as being reminded of the good in people. We had so much love and support. Daily check ins (sometimes multiple times a day) from family and friends. I also received phone calls and messages from people I would have never imagined, but they wanted us to know that they were thinking and praying for us. Local churches had prayer chains. Friends, family, and co-workers sent care packages, gift cards, gas cards, money, etc. to help us get by. I learned that even if things don’t go the way I wanted them to (for me - breastfeeding/pumping), it was okay because my baby’s needs were being met.

I feel most importantly, I learned that it’s okay to speak up and demand more. If something doesn’t feel right, it probably isn’t. Being my baby’s advocate was (and still is) my number one priority. Finally, our experience showed the importance of leaning on your partner and being there for one another. My husband was so patient and gentle with me. He would encourage me to take walks, to get out and breathe fresh air, even if it was just for a few minutes. This was so important.

Today, we have a happy, healthy boy who is running all over the place, climbing on everything, wants to be outside 99% of the time, is fiercely independent, and loves his family. Someday, when he is older, I will share with him just how much of a miracle he really is.

-NICU Mama Jillian