Part 2- NICU

Every day we got up and visited my daughter in the NICU. We did skin on skin time, we held her while she slept, we changed diapers and we took so many pictures. She was on oxygen and had a feeding tube, so we really never saw her entire face those first few weeks. We also had to leave her in the incubator at first and she was on the blue light for her bilirubin levels. Each day was hard for us. We would visit, stay all day, but then go home without her. The hardest day was day 7, which was also my birthday. I was happy and sad at the same time and quite honestly an emotional wreck. My husband coordinated with the nurses to surprise me with my gift in the hospital- he was just so strong for me at that point and I am still so grateful. I also continued to pump every three hours since that first day and on day three my milk came in. I was happy knowing that I was helping my daughter out the only way I could at that point. And I was hopeful I would be able to feed her soon. After two weeks, I was allowed to feed her myself. That was such a happy day! I finally felt like what I had been doing paid off. When I was present in the NICU they would choose some feedings for me to be able to feed her. I was so thankful, but it was hard to not be upset that my contact with my daughter was being controlled by someone else. Additionally, every day going to the NICU meant that I continually saw mother after mother taking their new babies straight home. That was so tough and I just couldn’t understand why this was our story, why I couldn’t take my baby home. I did my best to be strong but as the weeks went on, my frustration grew. My husband went to work shortly after her birth, part time so that he could get some leave time and still have time to visit the hospital. We fell into a new routine- he would work the morning. I would have the morning at home and we would spend the afternoon into the evening at the hospital. We learned the medical lingo and followed closely with what milestones our daughter needed to hit prior to coming home. It had nothing to do with her weight, which was strong from the start. She needed to go several days without bradycardias (brady’s) and even weeks into the process it was not looking favorable. She also needed to be feeding without the tube, which was happening around the beginning of the fourth week. We thought things were improving at one point until we walked in one day and our daughter was visibly sick. I had to convince the doctors and nurses that she was in fact sick (very frustrating) and she was moved into isolation and the feeding tube went back in. We were devastated by the feeding tube. Our daughter hated it too and would cough or sneeze it out. Between that and being sick, she was visibly miserable and we tried so hard to help her be comfortable. I really do not understand the hospital’s decision to put the tube back in. My daughter showed every sign of wanting to nurse and they did not let me for several days. Frustration is not a strong enough word to describe how I felt- as a mother to be told what you can and cannot do for your child. It’s the hardest thing. Our daughter was basically in isolation from the other babies so that they didn’t get sick, but we could be with her, until tests showing the correct results came back. These tests took almost two weeks to get back. If you can even imagine, we were 6 weeks in at this point. Finally, our daughter was feeling better, she was cleared from isolation, and yet the brady’s continued. No one could tell us why this was happening. Earlier in the process they hypothesized reflux and tried one kind of medicine and rice in her milk. Since neither of these things made a difference, they were stopped and we were again told that she would just grow out of the brady’s. Not what parents want to be told when their daughter is full term at that point and it clearly was not happening. We were very unfortunately at a hospital that did not have pediatrics. This was not something that went into our decision of where to deliver, but had I known what I know now, I would have thought differently. Our daughter essentially sat in this NICU with the hope her issues would go away, mostly because the doctors had no way of running appropriate tests. They continued to hypothesize a variety of things- saying her eating coordination was off when she nursed fine. She only had issues when the nurses tried to feed her too fast. We became growingly frustrated at the doctors and started to suggest transfers. At full-term we strongly pushed for a transfer. One question we hear from a lot of people external to this situation is why we didn’t move our daughter sooner. Unless you have been in the NICU, you cannot understand- but basically your child does not belong to you at that point. The doctors have full control of that child. Had we picked her up to try to move her, we would have been met by the police. I am not kidding. Regardless, we finally convinced the doctors for a medical transfer and were on our way to a Children’s Hospital. It was over 2 hours from our home so we planned to stay down there until we would take our daughter home. We were 6.5 weeks after birth at this point.

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