Saturday, October 6, 2012

Day 61: Return to the NICU

So Tara is back in the NICU with a viral infection and on CPAP. It goes like this...

The last few days have been full of baby care and waiting and intense nothing really to comment on other than our growing worry about Tara. It started when we saw the neonatologist on Tuesday he asked us if she always breathed so deeply. It was the first time I'd noticed it...and I wasn't sure. But after that point it was all I noticed, to the point I started to think I was paranoid. Then on Thursday evening I thought it seemed worse. We even thought she felt hot like she had a temperature, but the earscan thermometer said she didn't have a fever. I now think the earscan thermometer is a piece of crap even though the instructions were written for babies and plan on taking a rectal temperature from here on out. Anyway, Friday morning Geeta and Vinnie both said they thought her breathing was more labored as well and I decided I wasn't crazy and said we should take her back to the doctor, so we made a doctor appointment for 6pm that evening.

Dr. Satish Saluja told us that she was breathing too labored and was exhausted doing so and wasn't comfortable. He felt like she probably had a viral infection, and her pulse oximetry needed to be monitored. I gulped. I knew there was only one place that can happen....back in the NICU. He wanted her hemoglobin checked and blood gasses as well as a chest X-ray and perhaps some other tests. We rushed home and packed diapers and wipes and changes of clothes and then went swiftly to Sir Ganga Ram Hospital which is a 10 minute walk from the house but a 2 minute drive.

The waiting room is not a fun place because Indians believe that someone should never be left alone in the hospital. This means someone is camped out in the waiting room 24-7, complete with luggage and folks taking up entire benches sleeping. Everything was "claimed" and the only semi-unoccupied looking seats were off in the corner. Vinnie and I handed over our daughter, and I tried hard not to cry when the nurse took her out of my arms. The doctor said he was busy with another baby but when done would look over ours and evaluate her, then call us into his office for 10-20 minutes to discuss her case.

The wait was awful, but it wasn't too long. Dr. Sandeep told us that she was in mild respiratory distress, likely do to a viral infection. Her O2 sats were running 86-89 instead of the desired 90th percentile. He ran through the tests they would be running and assured us that she looked like she would be fine it would just take a few days of giving her supportive measures for breathing while she recovered. They gave her orogastric feedings again to save her all the effort of bottlefeeding. He started to explain some basics and diagram the lungs on a piece of paper but I swiftly told him that I was a NICU veteran and he stopped, as he realized this was not my first rodeo and I understood what he was talking about. As soon as he reassured me that mothers were allowed unlimited access to the NICU I relaxed immensely and could not stop a few tears from sliding down. Fathers are only allowed brief visits with special permission from the doctor. I think at that moment I realized that our roles had to shift and that I had to trust Vinnie and my mother-in-law to care for Vivek that night and day while I slept at night and camped out at the hospital during the day. He alleviated my fears that I had somehow caused her more harm by possibly missing a fever, and said that this kind of viral infection is common in all preemies and difficult to prevent. He mentioned the remote possibility that it could worsen and she could be put on a ventilator and I'm sure I turned purple at the thought in spite of myself.

I was issued a gown and foot covers and escorted to see her. I was relieved, and could see that this NICU was very good and had much better equipment than Dr. Kothiala's but the care was comparable. It looks a lot more like a NICU in the US. Dr. Sandeep was very friendly and reassuring, and pointed out to me how her chest retracted and that it worried him because it showed she was having more problems with inspiration than expiration. While the blow by oxygen tent at 5mL flow was giving her 100% oxygenation, he felt that putting her on CPAP would benefit her because her blood gasses came back and showed some mild acidosis. He asked if I knew what that was and I assured him I did, and agreed the positive pressure would be good to help her breathe easier with less effort for now. The chest X-ray came back while we were discussing her care, and I was intensely relieved to learn that it was clear and showed no pneumonia.

This all took several hours, and in the meantime Vinnie was doing battle with the folks at admissions and billing or waiting miserably in the exterior waiting room. I did call him once and go out and talk to him once to fill him in. All my waiting was done in the "Mother Feeding Room" where there was a bunch of other mothers, some who spoke English and were very nice to me. I don't have the free reign that I did in Dr. Kothiala's NICU for sure, and as far as I can tell protocol is that while your access is unrestricted you are expected to go in and see your baby for a few minutes and can even sit in one or two spare chairs for a while, but then you go back and wait in the Mother Feeding Room. They also kick you out at random if they need to do a procedure or if you are there too long I guess. I got kicked out twice, but eventually realized no one was going to tell me it was okay to come back it. It is completely stupid, but not as stupid as what Vinnie was dealing with at the time. They expected him to pay $1100/60,000 rupees up front. They expected him to just be carrying that sort of money around in cash. Crazy! They were rude to him and they actually called Dr. Saluja to "vouch" for him. It is a strange process and we got some wierd ticket that we must show that we have paid in order for her to be released to us. Vinnie had to repeatedly reassure them we would have the money by tomorrow. So today he can only withdraw 20,000 rupees (10,000 from each account) to add to the 20,000 we happened to have on us at the time, and will borrow from the family until we can go to the ATM the next day to pay them back. Don't you just love ATM daily limits?!

As we walked out to go home I told him I'd rather take a bicycle rickshaw to help calm me down in the cool air, which Vinnie agreed was an excellent idea as he hugged me tightly. Back at home I went straight to the kitchen and ate, since I had only eaten a small meal that afternoon and now it was late at night. Vinnie handled the barrage of questions. I took two sleeping pills and went to sleep as fast as I could while he stayed up with Vivek and then in the early AM traded off feeding responsibilities with Mom.

I awoke at 8am this morning after having an anxiety dream about blowing auditions for a musical in high school. I ate quickly, loved on my son for a minute, then took a bicycle rickshaw to the hospital. I memorized the way this time so that I could walk next time. I figured out how to get a new gown and that I am supposed keep in a bag with my name on it. Then I went to see Tara and insisted on seeing the doctor to get an update. Seeing her on CPAP wasn't fun, but I knew it was for her benefit and temporary. He told me that the blood gasses now showed her Ph more normal without acidosis, so the treatment is working. The bacterial culture is clear, so that confirms it is a viral infection and antibiotics won't be helpful. He said this will run its course in likely 3-4 days and she can be discharged, and he make take her off CPAP in the evening. But the most reassuring thing was to see her chest rise more normally and how easy she was breathing compared to how she was. I memorized it so I will forever know exactly what her breathing is supposed to look like so next time I will recognize very early when it is labored and can get her help sooner.

My new motto is "Do unto yourself as you would have your children do unto themselves." I am working hard not to pass on my perfectionistic tendencies to my children because I know they aren't healthy. I have been racked with guilt since yesterday, examining every moment trying to reinvent the past and think of what I could have done to prevent this or recognize it sooner. I mostly come to the conclusion that I could only have been a radical tyrant and locked them in a room with me alone and refused any contact with the family that we have relied upon heavily to help us in setting things up to live here. It just isn't reasonable or practical, but it doesn't seem to stop me from feeling guilty that I could have changed this somehow. But then I ask myself if I would want my daughter to be so hard on herself for her mistakes or be filled with unreasonable guilt. I tell myself I need to move forward and learn from my mistakes, but not dwell on the past and beat myself up and place unreasonable expectations because that is what I would want my daughter to do. I have to lead by example so that I can cause as little psychological damage in raising them as possible. With any luck, they may turn out normal.


  1. Don't beat yourself up. It sounds like it is very common. Hopefully all will be well in a few days. Hang in there!

  2. It sounds to me like you are a very normal mother. We all beat ourselves up over things that happen to our children, even if we have no control over it. I think your motto is a great one. Keeping you all in my prayers. Pam