When we arrived home from UCLA, our home became a revolving door of RN's, CNA's, and therapists. Once a week E would be weighed by an RN that would make house calls, Monday through Friday we were blessed to have a CNA that would come to our home and give me relief so I could sleep, exercise, grocery shop, or run errands. Considering I had been on 24/7 duty with E for the last 8 months of her life, I eagerly welcomed the support and help. E was given at-home therapies as well to help her with her developmental delays and finally began to make progress. I was even finally given the "OK" for E to be seen by a civilian pediatrician in town and made an appointment as quickly as possible.
E kept pulling her NG tube out and after watching her vomit everything she got from it, we stopped placing it and started working on beefing up her formula. I was given permission to start offering her soft and NOT pureed foods like scrambled eggs. I would give her anything that she would take and learn from mistakes if it made her sick or regurgitate. Almost nothing made the cut and her weight continued to be a significant concern. After another bad weigh in by the visiting RN, I was told that this looked pretty bad and to start keeping a food journal and even taking pictures of feeding efforts "for your protection". She and I would talk about ways to convince E's body to digest even the tiniest of anything NOT formula and she advised to slowly start adding rice cereal. I would add a tiny 1/2 teaspoon per bottle until E stopped rejecting it and up it by 1/2 teaspoons until we reached tablespoons. It took time and patience.
With E's weight continuing to keep her so small that on a growth chart she had dropped to -10th%, I took her to her doctor to go over the possibilities to help her. I was visibly pregnant and had her in her car seat sleeping as we sat in the exam room waiting for her doctor. The one I had chosen was the same one that had hospitalized her as a newborn and got her better so I felt good about going back to him. He made sure to prove me wrong as quickly as possible.
He walked in disgruntled with the results from her weigh-in and looked me up and down with disdain. I broke the silence by saying I was very worried about her weight and that nothing we were doing was making the difference for her. He refused to even make eye contact with me as I spoke. After letting me "rant", he asked me:
"Do you HOLD your baby?"
Taken aback I answered "yes, I hold her all the time".
Unhappy with my answer he elaborated "do you hold WHILE you feed her?"
Again I answered "she is too weak to hold her own bottle so that is the only way I can feed her, is to hold her".
"What about your husband? Does he HOLD her enough?"
"When he is home and I need a break, he does his part."
He looked me over like I was lying to him, looked at my pregnant belly, and made an assessment of his very own without listening to anything I had been saying to him. "Well, it is obvious she must not be loved enough to want to live and I will refer her to behavioral pediatrics."
"Excuse me? We love our baby and take care of her!"
He literally walked out the door without so much as looking at E or listening to a word I had said. I gathered our things and left the exam room in utter shock of what had just been said to me. When the check out receptionist asked if I wanted to make a follow-up appointment, I told her I would NEVER return to that office again. I stormed out and put my baby E in my van, got myself in the drivers seat and called D. I cried on the phone to him and he became enraged in a way I had never seen before. When I got home, he was there waiting and immediately went to the insurance representative on base and reported the pediatrician. They told him how bad they felt for what he had done and would investigate his treatment of other families in the future. I was not accustomed to D being that angry about anything ever. It worried me, but I just assumed the stress was getting to him too.
I decided to talk to the Navy clinic about just having them follow E's care as long as her original doctor was NEVER allowed near her and they worked with me. I took her in to see a new military doctor and she was wonderful. She did weigh-ins on her for a short time and would send her to different specialists and after a very short amount of time finally pleaded with me to give a civilian pediatrician another chance. She told me that E's medical needs were just out of her scope of expertise and so I did research and decided on a new pediatrician. By this point, I had openly asked for a case worker to do a walk-through of my house to protect D and I and they had found not a single thing that we could be doing better. I was in full defense.
I had a small encounter with the original doctor during E's last exam when we were leaving and she snidely sauntered up to me. "So, I guess they didn't anything at UCLA???" I looked her steely in the eye and said, "not yet, but they sure did find that she was failing to thrive and had to hospitalize her, didn't they?" She sneered and went back to whatever she was up to and I left that clinic feeling like fire was coursing through my veins. I felt like I was losing my mind and chasing a ghost the further into this I went with E. As I drove home with a one year old E that looked like she was a small nine month old, I decided to get her seen by the new pediatrician as soon as possible and made the appointment for her once I got us home.
E on her 1st birthday.
E eating the frosting of her cupcake on her birthday.
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