*There will be pictures of a premature infant in this post* I want to post a TRIGGER WARNING that this post, and the subsequent parts will detail hospital/medical bias, medical procedures, the NICU, and other subjects that might be triggering for some. There will also be pictures of premature infants which (from personal experience) can be triggering. I will post this at the beginning of each part.
The next morning when I returned to the NICU the baby was on a vent. They said that overnight she had issues with her breathing, and kept having apnea episodes. She was still on a nasal cannula, but it was thicker and green. They said that with preemies sometimes it's two steps forward, one step back, and that issues like this were expected. I was convinced that the drama of the night before contributed to this issue. I ended up asking the nurse to talk with the nurse manager, and getting it listed in her medical chart that it was ok for me to hold her during her feeding times. The nurse manager was very apologetic, but I was definitely wary of most of the staff at this point.
Something that's not talked about enough is postpartum anxiety. We talk about postpartum depression at length, but the anxiety slips through the cracks. The hospital basically told me they expected me to have postpartum depression. I wasn't overly sad about my baby being in the hospital, but I was anxious. What if she was upset and crying alone? Who was loving her, and reassuring her that they were right next to her to keep her safe? When I was there I watched everything. I wanted updates every day of her situation. I called for updates every morning before I went to see her. At home I was meticulous about pumping, and sanitizing everything. I washed my hands so much that I flared my eczema. My hands were so scaly and cracked. I avoided as many people as I could because I couldn't risk getting sick, and not being able to visit my baby.
The next few days were pretty mundane if you could call it that. I was on an autopilot schedule of calling the NICU, pumping, visiting, kangaroo care, pumping, and sleeping. Somewhere in that schedule I would eat, shower, and attempt to stay in contact with my friends on social media. I talked with my mom more often than I previously did. I needed things to distract me. I knew we were in for a long journey, and I didn't want to get tired out at the beginning. The baby did well growing steadily, and slowly getting the vent settings decreased. At one point she fluctuated on her temperature so they found a little shirt, and hat to put on her so that I could still kangaroo care. She ended up getting back on track after a couple hours of being held.
Her cord fell off when she was a little over two weeks old. The day nurse saved it for me. I was glad she did because my placenta was thrown away as medical waste. I had originally planned to save my placenta. The baby had been on the vent for a little over a week. The settings had been turned down to room air, and she was breathing well on her own. That night I asked the nurse when it would be discontinued as she hadn't needed it for the last two days. The nurse told me she did not know. I expressed the wish to have her reassessed, and have the vent removed if possible because at this point it no longer seemed necessary.
The next morning I called to get the status of the baby while I was pumping. The nurse informed me that her stomach had gotten severely distended. They had removed the vent, and stopped her feeding because they wanted to give her stomach a chance to rest, and opened her feeding tube to allow the air to vent out. The nurse told me that the doctor was unsure what caused the distension. They ended up having to move her feeding tube from her mouth to her nose because she kept using her tongue to push the feeding tube out.
When I got to the NICU I was told that I would not be allowed to hold her because they wanted her on her stomach to help move the air. They informed me that she was pooping, and didn't seem to be in any discomfort so they felt she was getting better, and they could resume her feedings soon. The extra air didn't seem to be bothering her though so they said she wasn't "sick". By this point she had not eaten since 1pm earlier that day. She was originally getting tube feedings every 3 hours before that point.
The next morning I called to get an update on the baby. The nurse informed me that the doctor believed the reason the baby's stomach had gotten distended was because of my breastmilk. She told me they planned to restart her feedings, but would be giving her formula. I told her I was not ok with that, but that I would be coming in to see the baby in a few minutes.
By this point my milk was well established. I was pumping so much that my freezer, two of my friend's freezers, and the NICU freezer were full of breastmilk. I ended up having to buy a deep freezer to try to offload some of this milk. The fact that they were trying to blame her stomach issues on me enraged me. I was so careful about what I consumed because I didn't want to do anything to harm the baby. I knew this wasn't my fault. I was tired of crying. Now I was angry. Now I was going to roar!
When I got to the NICU that night I had a bag of breastmilk with me. The nurse was reluctant to take it. She told me there was no point in having the milk when the doctor was going to change the order to formula. I told her under no circumstances was my baby to have formula without my permission, and if there was an issue she could have him come talk to me. She eventually took the breastmilk, checked it into the computer, and put it in the freezer.
The doctor restarted her feeds that afternoon. He wanted to try giving her formula. His rationale was the if she received the formula, and her stomach was fine then clearly my breastmilk was the issue. I informed him that I had been pumping since the day she was born. If he felt it was something I ate that hurt the baby he could throw out all the milk they currently have, pick any random day on the calendar, and I would bring in the milk from that day. I felt backed into a corner because I wanted her to eat, but I wanted her to have breastmilk! I eventually relented. Her stomach was of course fine because the issue was the vent that should have been discontinued days prior. The doctor felt vindicated. I informed him that was the only time she was going to have formula, and every feeding after this first one had better be breastmilk. I left at 7pm when the nurses had shift change per the NICU rules.
I was late getting to the NICU that night. Again I had called ahead to let them know I was going to be late. When I got there it was 10:30pm. The baby's "hands on time" started at 10pm. This is the time they change her, check her vital signs, and check her weight. The nurse told me that because I had missed the hands on time I was not going to be allowed to hold the baby. At this point after my birthday fiasco, and now the breastmilk fiasco I was done. I took a deep breath to calm myself and firmly stated, "Listen I hold my baby every single night. I called to let you know that I was going to be late. I gave you the exact time I would be here. I want to hold my baby. I am not going through this with you tonight. I am not in the mood for this." The nurse relented, and I held the baby until and throughout her next feeding at 1am. I watched the nurse carefully. I stressed that the only thing she should be getting is breastmilk. She assured me it was.
The next morning I called to get an update on the baby. There was a new nurse I hadn't talked to before. I asked her what the baby was getting in her tube feeding that day. In a snarky voice she replied, "This feeding is breastmilk, but if she has issues again the doctor is going to change her to formula even if you refuse it." I didn't respond to the threat. By now I was livid. I had slept on the anger, and awoke in a rage. Every body was going to feel my wrath!
When I got to the NICU I didn't talk to anybody. I went to the baby's bedside, pulled up my seat, and waited for the nurse to stop by. I could tell the nurse was trying to avoid me. Between the conversation with the nurses yesterday, and the phone conversation this morning she knew I was going to be "that patient". Eventually she came to the podside. I told her I wanted to hold the baby. Once the baby was settled I asked the nurse to tell the doctor, nurse manager, and dietician that I wanted to speak with them. The nurse informed me that the doctor started his rounds at 10am, and would be by shortly with his team which included all the people I wanted to speak with. Perfect.
When the doctor came around I let the nurse give report, and waited . The doctor finally asked me if I had any questions. I told him that yes I had some issues with my baby's care I wanted to discuss. I asked the dietician if there were any specific foods I should avoid when breastfeeding. I told her that I was an Adventist. I followed the Leviticus diet. This was an Adventist hospital. I told her my diet had not changed before, nor after having the baby. She stated that any foods that caused me gas might upset the baby's stomach, and give her gas too, but in no way would it have caused the distension previously seen. I told her I knew that was the case, but I wanted to have a professional corroborate that belief. I then told the doctor that under no circumstances was the baby to have formula. I explained that I had relented the day before for that one feeding, but that I was not happy about it, and would not allow it again. I then told him that if he could not agree with and follow my wishes, then he could get her discharge papers together to have her transferred to All Children's Hospital where I knew they would follow my wishes.
To say the staff was stunned was an understatement. I am not sure if I they were unused to being challenged. The nurse manager gave me her card to call her directly if I had any issues, and the staff continued with their rounds. The nurse and doctor came back after rounds were finished. The doctor told me they would not give her formula. They would continue giving her breastmilk, but they would decrease her feedings to every 2 hours, and give her smaller amounts. I stayed at the NICU most of that day. I watched every tube feeding like a hawk. I was not letting my guard down with them. My postpartum anxiety was in full effect at this point, and nobody was to be trusted.
Stayed tuned for the next part! Catch up on previous parts here: 1