Day 63: Part Deux-Deus Ex Machina

So tonight when I'm making my 2nd visit to my daughter and singing The Rainbow Connection into her ear and pondering how I'm singing a song about faith when I have so little at the moment, the doctor walks up to me and tells me they are moving her out of the sick room of infected babies. I tell her that makes me happy, but why? She avoids the question. I ask why again. She then tells me they now think the blood culture was contaminated because they are all coming back completely clean now, and so she probably only had a viral infection in the first place.  It was probably all a false positive.

You know that famous photo of the Navy sailor in the ticker tape parade who is so happy he grabs the nurse walking down the street and bends her backwards and plants a huge kiss on her lips? I swear I almost did it myself.

This means that under the original "viral infection" diagnosis she should be discharged very soon rather than 10-14 days!  I'll get it confirmed with our primary doctor tomorrow at 11:30 counseling session, but they have to be pretty sure that her diagnosis was wrong to move her back into the regular NICU rooms right?! 

Tara hanging out with her Daddy on the bed before her hospitalization

This begs the question....should we argue the charges for the dangerous and painful spinal tap procedure and the antibiotics that she never needed in the first place? I now understand why people sue for pain and suffering because I know for the past 2 days I've been suffering tremendously, as has the entire family. Manu had sage advice to wait until she is discharged and in my arms before we argue anything, but he or Shalini will be there with us to fight the charges. It is not unheard of for medical records to get doctored here after the fact for shady purposes, so we will definitely take his advice.

I chatted with a nurse tonight about bathing Tara because a ring of greyish skin that sloughs off is around her neck, and she said she is bathed every morning but she will be more careful and work on that spot and it make take a few days to get it looking normal again. She also told me they change the diapers every four hours, which suprised me because I change at every feeding at 2 1/2 hours and it is always wet or soiled. She did say if they smell a dirty diaper they go ahead and change it thank goodness! Can't wait until she is at home and can get the royal treatment instead of her supposed VIP status.

I would love to tell you that Vivek shows some sign of missing his sister, but frankly I think he is just basking in all the extra attention and loving every minute.

He is quite the drama king, and howls in agony before he passes gas. Tara simply scrunches up her face and turns to the right (always the right side for some reason) and toots then moves on like nothing happened. She will sit around in a dirty diaper for two hours without comment, but if his is more than a little moist he will let you know about it. Worse yet, he won't stop fussing until the diaper change is almost over and you are fastening the last snaps on his outfit.

Geeta gave us all the giggles today and came rushing in the room holding Vivek saying "Hairdo! Hairdo!"  She placed him in my arms and I burst out laughing when I saw she had shaped his hair into a mohawk. She has been comforting me and trying to make me smile and laugh for days now, and I could see she was thrilled to finally suceed after cooking me special meals and offering soothing words and gestures even if I couldn't understand them all.

Mitlesh Auntie says she wants us to leave India with good memories from here. I told her we will...it's just we've been through so much for two months now and we are so homesick. I explained that when you come as a tourist it is a very different experience. You spend your time in search of entertaining things, and have fun with everyday experiences. Let's say you need something from the store. As a tourist in India that could turn into a several hour interesting adventure seeking something, taking in the sights and experiences and working through the challenges along the way. It's the sort of thing you laugh about and tell stories about later. When you have twin babies to take care of and need something and are most definitely not here to be a tourist, it simply a giant pain in the ass. Like the other day when it took Vinnie four hours to mail a letter. But I'll leave you with something cute I saw when walking home from the hospital tonight that struck me as a touristy moment.  Next to the dumpsters were three cows sleeping with a small calf. But one of these things was not like the other. There was a stray dog that apparently thought it was a cow and was cuddled up next to the calf, and none of the cows seemed to mind.

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 homesickness...so 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 90^th 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.