If you were to ask me would I rather have Tara in this big city modern hospital that is much more comparable to an American one or back in the small NICU with Dr. Kothiala, I would pick Dr. Kothiala hands down without a second thought. This NICU is huge and impersonal, and despite the fact that they all seem to do a good job learning the babies' names it does not mean that they do near as good of a job treating them like little people. Because my daughter is septic (has a blood infection) she is in a room with all the other babies who could be contagious. Out of 27 babies here 4 are ventilated and those 4 are all next to my daughter. Not comforting for me that all the babies with infections are in such serious shape, or that my daughter is at constant risk of catching what they have if the nurses slip up. Combine that with the fact that all these critical babies need constant attention and care and my daughter who needs no special care aside from IV antibiotics 3 times a day needs and the standard feeding and diaper changes. My daughter is virtually ignored and they failed to notice that she cries 30 minutes before a feed because she is HUNGRY! I expressed 3 times to 3 nurses that she was hungry, and tried to tell them that on the 18th when she was discharged at 1884 grams she was eating 35-40 mL every 2 hours, she was eating almost 50 every 2 1/2 hours at home, and now when she is 2355 grams they feed her 30mL and try to blame the 155gram weight loss on the bacterial infection. I don't think so! After talking to 2 doctors they finally agreed to feed her more, though I had a not so nice conversation with the first doctor who tried not to listen and talked down to me explaining that because of her very minor PDA (YES I know what that is so put down your pen and stop diagramming on paper) they had to feed her less. In Anand at least they understood the simple principle that if a baby is hungry FEED IT! Her O2 sats are fine before and after a feeding so I even if her breathing is slightly heavier when she is full I fail to see the problem! I breathe far heavier than that after a Thanksgiving meal and they don't admit me to a hospital...though perhaps they should because eating that much turkey and stuffing and pie perhaps I need serious psychiatric counseling.
This morning I was shocked to see her weight loss on the chart, when another nurse who talks and doesn't listen tried took the chart out of my hands and told me hospital rules state I cannot see my daughter's medical records. I lost my temper completely. I told her that was an idiotic rule and in my anger I told her in America that would never be allowed, and there should be nothing they hide from me about my daughter's condition. I managed to hold my tongue when she said India and America are different, because I have a couple of inappropriate comments about that. I alarmed her so much she called in the doctor I mentioned previously and he said in my case he would allow me to see her chart, and it is only in the most severe cases they do not allow it. That defies reason, but I got my concession so I managed to keep my big mouth shut.
He actually tried to tell me that all the chart had in it was her oxygenation levels blah blah blah and I cut him off and told him yes I do know how to read and do know what it contains. I had half a mind to tell him that I have 15 years training and experience in emergency medicine as an EMT/EMD and have spent 1 1/2 months with two babies in the NICU so I know what an oxygen saturation is dumbass! What is in her chart is exactly what I need to know to understand how she is doing, more so than their daily "counseling sessions" at 11:30 where I find they do more placating you than actually providing you with information. I know they are used to Indian women who are not as assertive and take this "it will all be okay...just pray to God" attitude that drives me bonkers.
I also despise that they do not allow you to do the most simple things, such as taking a pair of tongs and taking a sterilized breast sheild and bottle out of the sterilizer. I have to wait for a nurse to do something so simple. I also have to wait sometimes for a half hour until a nurse is available to package up Tara for me to hold her. Firstly, they are too busy with all the critical babies surrounding her and charting and hand logging stats and levels every 15 minutes to pay me attention. Secondly, they have a system where a folded up blanket underneath the babies shoulders must be wrapped a certain way in a mediocre swaddle before the baby must be placed in your arms. This means I can't simple pick her up and hold her myself like I could in Anand and have to wait lest I upset a nurse who thinks I can't perform something so basic as well as she can. Today I seized the opportunity when a ventilator broke down and both nurses were tied up bagging the baby and trying to replace the ventilator, and put her back in the isolette myself. They couldn't exactly stop me.
Have I mentioned all the giant oversized gowns they give you to wear are either missing ties so that you have to hold them closed and have only one hand free, or they tie so loosely that they hang open so far down in the front that it defeats the purpose of germ shielding entirely?
I cannot express to you enough how hard it is to be in NICU AFTER you have had your baby at home. It is so much harder to accept all the restrictions when you have had free reign to care for your child as you choose for several weeks. It makes you so angry you want to type everything IN CAPITAL LETTERS!
The one bright spot so far is Charu. So from 10:15-11:00 the nurse facilitator comes in with the mothers in the feeding room and leads and informal educational session and offers guidance. Thank God. She speaks English, as do ALL the nurses (though with varying degrees of accuracy). She talked to me for a half hour answering all my questions and making sense of everything, and giving me much needed reassurance. I found out a lot of things that they were supposed to do during an initiation speech they gave me with a signed orientation sheet a day and half late.:
- They only kick you out when they are doing a procedure and during doctor rounds, and a lot of the Mom's come in for feedings or care only.
- You get a new gown at the counter everyday, and put it in a dirty bin at the end of the day. In the meantime put it in a bag in the Mother Feeding Room with your name on it.
- Fathers may visit for only 10 minutes from 5-6pm. She admitted it is awful, but I understand that it is due to a cultural difference here that the father's role is not at all equal with the mother's.
- Doctors do daily "counseling" at 11:30 am and call each mother in to discuss changes in the past 24 hours and answer any questions.
- You can also get a bottle for pumping your breast milk into because they have them on hand and sterilize everything for you, and discourage you bringing things from home. They have an accreditation for being breastfeeding friendly.
- The facilitator is clearly a lactation consultant and took one look at my cracked and bleeding nipples and launched into a bunch of advice, including to rub some breastmilk on them every hour since it has healing properties and she will give me a cream if it doesn't improve. She said even if I only produce 2 mL of milk they'll be happy to use it. What a relief. She leveled with me about what I am doing and asked me "how long will you really keep this up?" It made me re-evaluate my goals a bit and rededicate myself to breastfeeding...because exclusively pumping is just not going to cut it in this situation. I need to start using the supplementer, because their mouths are big enough to handle it and the longer I wait the harder it will get.
The other bright spot that has restored my sanity is that in 1-2 days we can move to a single room, where I will stay and care for her and I'll have to trust everyone else to care for Vivek at the rental house. I'm hoping it will cut costs, but Vinnie came with Manu and discussed the billing and confirmed it would not be more than the NICU is costing. But most importantly I can be with her and care for her and not allow her to lie alone and cry for a half hour! We can have visitors, and Mom or Vinnie can relieve me so I can visit my son occasionally. This is not how I pictured these last weeks of waiting, and my husband will be flying home on or just after Tara's discharge day. I may have to brave the FFRO alone. If we can get away with bringing 1 baby if passports come before he leaves then we'll do that.
The hardest part of this journey is about to start apparently. I've been so strong this entire time, and people tell me I've displayed many qualities of character that are admirable. But the day I walked into the spinal tap I admit it broke me and for a day I isolated myself and felt defeated and weak and most of all let a negative mindset take over. I've decided after two of the hardest months of my life I'm allowed one crappy day to feel sorry for myself. I'm back now.
An interesting side note...I saw that on my daughter's isolette label tag that identifies each baby's name and vital stats, someone had written "VIP" in the top corner. I thought perhaps it could mean "viral infection protocol" or something medical. So I asked a nurse and she laughed and pinched my daughter's cheeks and said "VIP baby!" and another nurse did the same. I guess it means what I think it means. I don't know if she has been labeled as a VIP because of my foreign status and they guess that makes me rich or something, or simply because I am a constant pain in their a** and so they should try extra hard to treat her well lest they incur my wrath.