Thursday, May 3, 2012

Welcome home, Colin. Again.

Friday was an eventful day. I went in to the clinic for a follow up to a less-than-stellar ultrasound. If the results were good, I was going to go home. If they weren't? I was going to be admitted to the hospital to induce labor right away.

They induced me.

Six hours later, Colin James slid into the world. After a normal, uneventful stay in the hospital we brought him home on Sunday. We were starting to settle into our first night home when we noticed that Colin seemed pretty hot, so we took his temperature.

Fever.

We were all hot, so we stripped him down and waited to take his temperature again. Still fever. A lower fever, but still a borderline fever. We called the nurse line at 2AM and they sent us to the ER at Children's Hospital. We were seen immediately and a doctor came in to tell us the news: get comfy, you're being admitted for a few days.

I understand that fever in newborn babies is a serious thing, but I didn't expect that we'd have to stay. I especially didn't expect to have to watch my 2 day old baby get IVs put into his hands, a spinal tap drawn, and sensors attached all over his body. We were admitted to the NICU with nothing but a half-packed diaper bag.

The staff were very nice and they gave us the option to leave the room for Colin's procedures, but I felt like that would have been worse. Even though Colin couldn't see to know if we were there or not, I didn't want to abandon him to a crowd of medical strangers. So, I watched. He screamed. I cried. They blew a vein in his hand and had to try again on his other hand. They put a catheter in to collect a urine sample. The first lumbar puncture hit a vein and contaminated the sample with too much blood. The second lumbar puncture was a complete miss. The third puncture finally worked and we watched clear spinal fluid drip into a little specimen jar. Jared and I took turns saying comforting things to each other about how it would be over soon, he won't remember this, it's better to be safe than sorry. We needed to say that because we needed to convince ourselves that we'd done the right thing. We needed to assure each other that all of this was what was best for him.

Because, the thing is, we never thought there was anything wrong with him. I felt like I would have known if something were wrong. I thought he looked happy, he acted normal... there was just no way he could be sick. I figured he just got a little overheated like the rest of us sitting in the hot house. But still, we wanted to make sure, so we took him to the ER. If I had known they would do all of that to my tiny baby, I would have waited another hour and retaken his temperature.

I wish I had done that. I really do. Because by the time we got up to our hospital room, the fever was gone. If I had waited, we would have seen that he was okay. We could have stayed at home and continued to learn how to function at home as a family.

Instead, I took him in and once the doctor saw a fever we were stuck there for good. Jared & I slept in his room the first night, cramped together on a semi pull-out couch. I woke up a lot with every medical beep and machine whirring. I tried to ignore the other, gravely sick, premature babies' crying. It was a nightmare.

The social worker came by to talk to me the next morning, but as nice as she was, I felt stupid complaining to her. I knew there were truly sick babies in the NICU with us. I knew that we didn't really belong there, I knew my baby would be okay. But. I was still having a hard time. I can't really explain why it was so hard to see my baby forced to sleep in the plastic box typically reserved for little 2 and 3 pound babies. I don't know why I hated all of the sensors taped onto his body so much. I was nervous while I nursed him, afraid that I would to tangle his wires or pull out his IV. Every poke for blood and obnoxious alarm and unnecessary dose of antibiotics that he was given made me feel incredibly guilty for what I'd done by bringing him there.

I'd felt in my gut that he wasn't sick, but I'd brought him in anyway. I made all of those terrible things happen to him when he was just 3 days old.

The social worker recommended that we stay in the Ronald McDonald House down the hall for the night. She could (rightly) see that I was exhausted and I needed a break away from the machines and the sick babies. We checked into the House for the night and I got some sleep. The night nurses called us every couple of hours when Colin woke up so I could come and nurse him. I felt silly taking a room there, but I am so glad that I did. The rooms were beautiful, dark, and quiet. There was a real, queen-sized bed for Jared & I to share in comfort. Nothing remained to make it feel like we were in the hospital. I woke up feeling a million times better the next day, but I still felt guilty.

By our second day there, we had received preliminary test results back showing that Colin did not have an infection. But still he was hooked up. Still they poked him. Still they pumped him with antibiotics. Jared and I were still feeling guilty. We started talking about just taking Colin home, where he belongs, against medical advice if we had to.

We both felt like taking him home was right, but it was terrifying to say anything against the doctors. It is hard for me to go against rules, to resist doing what people who "know better" tell me. It was scary to say anything because I knew they would judge us. They would think we didn't care. They would think we were worried more about hospital bills than our baby. They would think we were too lazy to give up a few days of our lives to stay in the hospital.

Really, none of that was true. We just felt like the hospital was wrong for him. We felt like the drugs he was receiving could be hurting him more than helping to fight against the small possibility that he was sick. We felt like we should be holding him as he slept instead of leaving him in that plastic coffin-shaped box. We thought all of the blood draws and the weight checks and temperature takings during the middle of his sleep were not good for him.

To make a long story short, we felt like he just belonged at home. We felt like he would be better served by being with his family instead of rotating shifts of nurses. In my head I had this feeling that he shouldn't have to listen to other sick babies' cries. We felt like we had everything at home that we needed to better care for him - a normal, healthy looking newborn.

That afternoon, I finally mustered the courage to speak up to the nurse to ask about taking Colin home, even if it was against medical advice. I needed to ask if there was any way we could take him off of his monitors and stop poking him for blood all the time. The nurse was very kind to us, and she said she would send for the doctor and have the doctor discuss different plans with us. I felt relieved. I felt weight come off of me for trying to say what I thought was best for my baby.

But when the doctor came in, he crushed us. Before we could even place our arguments before him, he told us there was no way Colin could go home.  He was so cold and distant from us, standing in the far corner of the room like he was offended by my breastfeeding in front of him. He was not considerate of our feelings. He didn't even pretend to consider our side. When I started crying, he said nothing to comfort us.  Instead, he explained to us in the most condescending terms that he knew infinitely more about babies than we did. He tried to scare us by telling us how many babies he has seen die. He tried to bring up the tiniest details from Colin's chart as  possible indicators of how potentially sick Colin could be. We later looked up his "evidence" and saw that it was pretty much meaningless.

I held Colin, who had fallen asleep while nursing, and dripped tears all over him as the doctor tore us down and made us feel like we were horrible parents. Anything we tried to say was either interrupted or just dismissed as wrong. Wrong, because. Because he was a doctor and we weren't and that's it. Never mind that he had never even seen Colin before 4 minutes ago. Never mind that he only knew Colin from a chart before he came in with his mind already made up. Never mind that we are intelligent, loving parents who completely understood the situation.

He forgot his hippocratic oath. He harmed us. He bullied us and made us to feel like child-endangering, uncaring parents.

After all of his berating, when he saw that I wasn't going to back down about wanting to take Colin home, he said he would call Child Protective Services on us because we we did not care about the well-being of our baby.

We explained that we could take his temperature at home just as well as they could. We explained that if (on the off chance) the final cultures came back positive, we wouldn't hesitate to bring him in for further treatment.

But the doctor didn't care. He was set in his ways. He reiterated that he would call CPS on us if we tried to take Colin home, then made a point of saying that there were extremely ill infants who needed his care at the moment and that he had no more time for us. Then he left.

The nurse was there watching us with pity while we were being bullied. She tried to comfort us when the doctor left but it was hard to take her seriously. She could have said something kind to us while the doctor was there. She could have tried to soften the doctor's blows. But she didn't.

We spent another night at the Ronald McDonald House. I cried in the shower and licked my wounds, trying to forget about what the doctor implied about me as a parent.  Aside from waking up to feed Colin throughout the night, I slept well and woke up accepting that we'd just have to stay in the hospital for another day.

Our day nurse, Gail, was back on shift when I woke up for the day. She made us feel better. She advocated for Colin, suggesting that he be taken off of monitors. She fought to get him off of unnecessary IV fluids. She picked out cute clothes and blankets for Colin to wear that disguised some of his monitor wires. She didn't discourage us from holding Colin whenever we wanted. She was patient when we tangled up his cords and took twice as long to get things done. She counted down the time to when we could take Colin home. She sat with me and talked with me about her family, about my family, about good places to eat. She let us take his temperature, change his diapers, untangle his wires. She let us be parents to him and she treated him like a normal baby instead of a patient. Gail was the best.

On our last day, Gail was there to see us off. She said such kind words to us as we left. She told us we were good parents. She helped me give Colin a bath to wash off all of the residue from the monitors stuck onto him. When Colin was clean, fed, dressed, and wire-free she asked to hold him. I was happy to hand him over to her and she just held him and talked to him like she really, truly cared about him. And I think she did. It's amazing what a big difference one kind person can make.

We took a detour on the way home from the hospital and met Oliver and my parents at a restaurant for brunch. On the drive home with Colin and Oliver filling the backseat of our car, I felt 100% better.  We got home and took naps. We took a family walk to the park. We drove as a family to eat dinner out and pick up Mya from my sister's house. We came home and we all got ready for bed. We all slept well. I'm starting to forget some of the poking and crying from the hospital. Colin looks healthy, Oliver is proud of being a big brother, we're pretty well rested with all things considered.

It was long delayed, but it was a good first day as a family of four. Welcome home again, Colin.

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